So is this it...?

Discussion in 'End of life care' started by DesperateofDevon, Oct 14, 2019.

  1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    oh it seems the ranks are really closing now!
    The safe guarding social worker has rung & now the community matron who insists no problems with swallowing/ tried to get Dad off his Butec patch etc is part of the professional team who will now be having a meeting about dad without us being present!
    So the meeting will will be in will be after the “professionals” have discussed Dads care & safeguarding issues!
    I’m so angry!
    I feel I have been cut out of the process until they have discussed the safeguarding & come to a resolution without an advocate for Dad being present.

    surely as Dads advocates we should be allowed access to this meeting especially as the community matrons clinical assessments have been so poor- Dad in stronger Butec patch instead of co codamol & also on oromorph.

    it seems that this community matron is able have the time of the meeting changed & insert herself into the process when the Doctor has been made aware we don’t trust her judgement after poor clinical decisions. Not only has she rung social services & inserted herself repeatedly into this process; but she still continues to support the homes claims.

    who will be the advocate for my Dad if not us?

    how more ridiculous is this process going to become?
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    I really hope no one ever experiences the frustration of trying to ensure care needs are met in a care home.

    You trust the care home to adjust to your PWD needs as they change along their journey.

    You trust the social services to ensure that the PWD best interests are met.

    You trust clinicians & their duty of care to your PWD

    You trust the process when all else fails to protect your PWD

    ...... so where do you go when all else fails & the system closes ranks against you. No access to your PWD care plan, having to prove that the home has made mistakes in that elusive care plan that has been detrimental to your PWD.

    Worst of all you can’t remove your PWD from that care home even if you wanted to because the care is funded by a county council from another county.

    so sorry if anyone else ever goes through this horrid situation.

    - if a clinical mental health team assessment was done
    - if a speech & language team assessment was done
    - if a occupational therapist assessment was done

    But that’s not going to happen by Monday is it ... especially as the request for these has been deemed not necessary by the care home & community nurse.....so yes the ranks are closing!

    So much for having faith in the process
     
  3. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    I
    I would have thought you should have the right to be there.Especially as your dads advocate...
    So there is no one there to speak up and hear his voice!

    I can see why you are so upset.I would be extremely angry too.
    Can you not go over their heads to anyone higher up???
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    I have taken advice & hope to get some legal advice tomorrow. How can this be allowed to happen?
    I really am so upset that the care home can refute all claims & the safeguarding team say well the professionals say. Even when the safeguarding team visited Dad & found him slumped & non responsive- the opposite to the care homes statement about his capacity & condition- we are still being pushed out !!
    The safeguarding officer ( phone call to say community matron now in original meeting & we would be invited to one later when the community matron wasn’t present !) asked today if the council would pay more to meet Dads needs , if not then he might have to be moved to a nursing home? Really! When I mentioned CHC funding I was told just because your needs meet the requirements it doesn’t logically follow that it will be given. I guess if you are funded by one county to have care in another county it’s probable that you won’t get CHC funding!

    my darling dad is ex services!
    He did his duty for his King & country & then his Queen & country.
    Who will do their duty as my Dad did his?

    ... what sort of society do we live in?
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    My Dad couldn’t be placed in a care home near his home, the options were an hour an a half drive from his home - or a care home in another county that was close by ( half hour journey) to me; his only child. As Dad is council funded I didn’t have a choice it was the nearest one.
     
  6. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    121
    Female
    @DesperateofDevon you say he was in the ex serviceman?....have you thought of going down the forces benevolent fund? they help all age for the rest of their lives when the going get tough..... health and finance young and old.....
     
  7. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    121
    Female
    I am horrified this is happening to you and your Dad .....there must be some redress for what is happening. Like hospitals have PALs ..... is there some sort of ombudsman or impartial group for support. Have you spoken to the helpline. Sorry if I am stating the obvious or repeating things already done. Someone is accountable....But to whom as Dad cant speak up for himself. Its all stressful enough without this added pressure.
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    Last night I sought advice & I am really trying to keep Dads best interests as the focal point at all times: no matter how distraught I am concerned that the process appears to be letting him down I am trying not to be to emotional about this situation but am now struggling.
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    I feel guilty for posting this, especially considering all that’s going on. I am struggling to fitful my work commitments. Being a registered disabled self employed person means I have a support worker through Access to work- yet I am struggling to focus & prepare artwork & designs for the next couple of months. I find no matter how early I start or how late I work that the constant pressure of trying to sort out Dads care takes over any time I try to carve out for myself.

    I am beginning to dread each day. I wake up & crythe utter sadness & frustration at not being able to ensure Dads best interests are being met.

    Each day a little more of my health is being eroded & I feel like I want to just walk away from this situation completely, but no one else knows my Dad like I do.

    How can I just walk away from this kind decent man who has adored me & treasured me, always with my best interests at heart, always with unconditional love. This disease & process has finally broken me. I can’t stop the tears anymore ...

    I truly believed what we were asking for was just basic care needs to be met.& always with Dads best interests at heart.
     
  10. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    121
    Female
    oh my i really feel for you. its an awful place to be. Can you step back from the work situation for a while to take the pressure off yourself before you break completely. i am a crafter and know if the heart isnt in i then its really hard to muster anyinterst and the pressure builds which turns off even more artistic flow. Adding this to an already highly stressful situation has you at breaking point.
    can you talk with your AtW support worker re workload? and how to help manage the situation. maybe stepping back and taking a little break from it, if only for a week or so, will lift the pressure and you come back with an added vigor and do far more than you are trying to do now and not achieving
    Prioritise your precious time. Sort Dad out .....come back to work refreshed and ready to roll. your work will be better for it and so will you, everyone has a breaking point and no shame in reaching it.
    another point.....you support lots of TP members with good advice......step back and re read your posts as if it was someone else writing it.......what advice would you give..... hmm take the advice.
    Best wishes
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    Today I rang MIND for legal advice & help. Call the safeguarding team & ask their safeguarding policy, contact an advocacy consortium( I am Dads legal advocate! ) , contact a community care solicitor details in the Law society.


    I then phoned the Dads social worker, who said call the County council & gave me a number that led to an automated phone system. With another number to ring if an emergency or if you want to speak to someone.
    I ring this number & am told that the safeguarding policy is I should be present should be present in the meeting as planned; so I ask for contact details of the person who made Mondays appointment,& their details can’t be found; but now the head of the department’s secretary has been notified of my concerns & will look into it to see what’s going on.

    Trust the professionals
    Trust the processes

    Honestly I’d love to be able to...
     
  12. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    121
    Female
    that must be so hard to put your trust in any of them
    its a daunting task you have ahead of you
     
  13. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    I thought you were entitled to be there..
    I am glad you got somewhere .Fingers crossed that somebody is taking notice!
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    I really now have no faith in the process! Especially when seemingly the process rules & regulations are being changed to suit those who should be under scrutiny.

    Evidence & truth are no longer a consideration it seems. The facts are being ignored & disputed! Duty of care .... well that seems to be going the same way

    Shockingly apparently funding issues of care has been brought into safeguarding
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    I have never heard anything like this.
    I am gobsmacked and have no idea what to suggest.
    I am so sorry you are going through this. Keep strong ((((((((((((((((((((hugs)))))))))))))))))
    (Im also sorry that I have only cliches to offer :( )
     
  16. Pete1

    Pete1 Registered User

    Jul 16, 2019
    184
    Male
    Hi @DesperateofDevon, I am absolutely gobsmacked - my heart goes out to you and your Dad. When you are going through hell, keep going. Stay strong.
     
  17. Palerider

    Palerider Registered User

    Aug 9, 2015
    912
    Male
    North West
    Nether do I @DesperateofDevon , I am utterly disgusted at how things have become for you. I don't know how best to get this put right
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    I can’t tell you how much I appreciate the support. I cried a lot yesterday at the pure frustration of the situation. Then I pinged emails off to everyone who has ever been involved in Dads care!

    As I have got nothing to lose & maybe openness & honesty might just help?
    probably the wrong thing to do but desperate times need desperate measures.

    I did get one email back from the funding council - enquiring as to why I was sending them an email....... umm because you are funding Dads care & his care needs aren’t being met.... really wanted say duh!

    The care home played another classic ....email from them - the district nurse has been in to assess Dad ( no no one let us know that a medical practitioner was visiting!) Dad has redness on his spine again- so more sitting in the upright chair with a pillow behind him! If only Dad could sit upright!!! Oh but he’s now got an inflatable cushion to sit on.....so nothing about his crumbling spine being protected or a special pressure mattress being needed. Do I really have to provide all the answers again to these so called professionals- at least they are kind enough to provide a body of evidence via emails !!!!

    Meanwhile no answers from The investigating county council or the funding county council. Even Dads allocated social worker didn’t seem to understand the seriousness of Dads situation.

    I know Dads warm,washed, etc but if Care needs aren’t being met without us the family pushing continually to get those needs met then something is wrong with the system.

    So my lovelies if I don’t get any answers before Monday - I am going to turn up to the 1 pm meeting & will ask directly to the person chairing it why we shouldn’t be present & under what part of the care act 2014 that falls.

    Yes it’s confrontational
    Yes it’s probably not going to do myself any favours
    But then this whole process isn’t about me ......it’s about a gentleman who is no longer able to express himself or his needs, a gentleman who never did an unkind act in his life, a gentleman who those who knew him before dementia have only his thoughtfulness & kindness to tell me of.

    I cannot let this lovely man down now by worrying about treading on toes.

    So yesterday I rang & emailed all those who have ever been part of Dads care & maybe just maybe some one somewhere will help Dad get the care he needs.

    I know that I have done everything I can do to ensure his welfare & wellbeing.

    If the care home won’t take any notice, the funding council won’t take any notice, the safeguarding enquiry won’t take any notice of the ongoing issues, if I cannot afford a solicitor to take on Dads case, the Doctor can’t get the care home to understand the medical issues Dad is experiencing, paramedics & TEP forms being put into action doesn’t mean anything, reduction in medication doesn’t mean any thing, being put on morphine patches & them being increased as well as oral morphine doesn’t mean any thing .... what chance do any of us have of making someone somewhere sit up & listen!
     
  19. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    Sometimes you have to be confrontational.As much as you hate it.
    It is ALL about your dad and his issues and how they are being managed..
    Good luck !!
     
  20. Lyd

    Lyd Registered User

    May 27, 2019
    46
    Be proud of what you are doing out of love.
     

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