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So is this it...?

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

  1. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    104
    Female
    France
    Good luck. Sounds to me as though trampling on toes is the only way to go. Infuriating, because it shouldn't have come to this and will take its toll on your energy, but ... sock it to them.
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    Just had email from Dads GP
    He won’t be at the safeguarding meeting

    the district matron will be attending & the decision yesterday to stop bed rest due to redness on Dads back is yet another care issue as Dad doesn’t have a reclining chair & has a crumbling spine!

    the social worker assigned Dads case isn’t at work until Monday the day of the safeguarding meeting.

    the council paying for Dads care say it’s being looked into by the county council Dads care home is in.

    where in all this is the duty of care
    When does the 2014 care act apply to any of these people?

    have we really reached the time & situation where neglect of needs is now acceptable practice ?

    someone somewhere has got to take notice surely. 2014 care act & regulations are being ignored & compromising Dads care

    come on someone please...

    Help is required now, this situation is ridiculous

    I have documented evidence to prove all of this, but no one is taking any notice of us.
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    So safeguarding triage team at funding council will now be approached by health care authority in that area & Dads case will be flagged.

    still no answers from those in investigating council.

    Dad has SALT team going in at lunchtime so I’m off to see what they say for myself! thankfully I got an email from a member of staff to give me a time

    keep telling myself I’m not alone in this ...

    ... but not feeling as if I’m supported at the moment

    just feel very alone & keep crying with the sheer frustration & sadness at this situation.
     
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    793
    Female
    cornwall
    I’m so sorry!I wish I could be of more help and support for you and your dad..You are not alone here...Sending ((hugs))
     
  5. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    475
    Bedford
    How absolutely horrendous for you and that is an understatement. Thoughts with you
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    Today the SALT assessment opened up Pandora’s box & all Dads issues were noted & documented.

    Today I said no to the paracetamol produced in a fizzing cup of fluid & asked where the oromorph was. Why? Because paracetamol is dispensed in liquid form, & is pinky orange- Dads has it before & its gentler on his stomach. Fizzing drinks produce acidosis.

    so Dad didn’t get his oromorph at lunch time. I’ve just got home & he didn’t get it while I was there.

    But I did get him into his room & have left him comfortable cuddled & asleep.

    I guess you could say today I spoke up & didn’t shut up infront of adversity. The home hadn’t been honest about his needs to the SALT team - I have hope again that someone somewhere will raise concerns that back up ours.

    Yes I think I actually have a glimmer of hope that Dads true care needs are starting to be seen. I’m not letting my guard down though, but have thanks to a lovely member of staff have Dads care plan.

    Also just received Dads medical records ..
    It’s going to be interesting reading.

    So when everything seemed bleakest a glimmer of light or three! Let’s hope it’s not oncoming traffic!!!
     
  7. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,343
    Nottinghamshire
    I’m glad you can see the light at the end of the tunnel @DesperateofDevon

    Your dad’s lucky to have you looking out for him - although it’s disgraceful that you should have to.
     
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    793
    Female
    cornwall
    Let’s hope not!
    Some good news at last!
     
  9. Pete1

    Pete1 Registered User

    Jul 16, 2019
    252
    Male
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    I just hope that this thread will be used to stop others from going through this experience
    Did you know you can self refer to your local CMHT?

    no I didn’t, but I do now thanks to a lovely lady!

    Learn something new every day my granny used to say...

    just wish I’d known that little fact a couple of months ago...
     
  11. TNJJ

    TNJJ Registered User

    May 7, 2019
    793
    Female
    cornwall
    You can also self refer to SALT too.
     
  12. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    605
    Female
    Is it time to name and shame time do you think?

    We are all accountable for our actions and if your lovely dad is being so badly failed by the system, someone, somewhere has to explain why. The time is ebbing away for your dad and these are precious days for you to be with him and not to be spent untangling bureaucracy.

    Have you considered contacting your MP as a matter of urgency - or go to the local press?
     
  13. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    I’m so horrified to read all you are having to go through to ensure your dad is looked after! You are amazingly strong (although you probably don’t feel it) and you are persevering where others may have faltered long ago. I note in an earlier post you said your dad no longer has a social worker Is there a reason for this? My mum was also fully funded from a county council outside of where she was living (200 miles away in fact), and she remained under the social worker from the originating council. When a care needs reassessment was needed, they contacted the area mum was in and discussed things with them.
    Have you contacted the care quality commission (CQC) for advice on what to do if safeguarding etc doesn’t work? Also, I don’t know what the MP is like for your area, but they are often very good at getting ‘officialdom’ to sit up and take notice. They are elected to represent their constituents after all, and it is parliament that passes things like the care act 2014. It is their duty to ensure it is upheld.
    Sending you hugs and strength to continue fighting for your dad xx
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    Thank you for the advice everyone I wanted to reply earlier
    @Beanie01 @Dimpsy i wanted to get Dads care sorted first & foremost, his best interests have always been the priority
    There will be plenty of time later to follow up
    @TNJJ no I didn’t know that you can self refer!! Slightly kicking myself here at the moment !
    @silver'lantern thank you for letting me know about ex service personnel after Monday’s meeting I will look into that
    @70smand I was hoping with proper assessments that the palliative team will be contacted; otherwise again I will be contacting them for advice. It’s another agency to add to the list. Thank you
    @LizzieM as Dads TEP plan kicked in a few weeks ago now the hospital wouldn’t be able to treat him with medication, but I did consider doing this
    @Palerider @Pete1 @Fishgirl @Bunpoots @Grahamstown @canary @anxious annie
    @Starbright @Lirene @Grannie G @AliceA @LizzieM @Buttercup24 @Bikerbeth @daveyshadow @Lyd @Jenni_B & anyone else who has posted on this thread
    Thank you your messages of support make all the difference I cannot express how much.

    so today I shall be reading through Dads medical notes - sent via email by the surgery.
    Dads care plan was given to us yesterday - it’s the same statement of needs when he went into the home 12 months ago.
    The S/W supposedly doing the enquiry rang .... asked to confirm via email what was said- no email as of yet ! Same S/W rang as per usual from a mobile phone & had this conversation with OH!! I was with Dad .....
    The county paying for the care package has now had issues raised by that county’s health authority... I have no idea how that happened but thank you to whoever you maybe, Also raised issues with the investigating authority about due process. Also the paying county’s health authority provided us with a contact number for the investigating county’s social services- a landline!! Hurrah!!

    Still no word from the investigating County Council.

    So my lovelies it’s another day of reading & collating information. somewhere in that I need to fit in work, dog walks, Dad, food shopping ( bit Mother Hubbard here!), family life & a bit of me time!!! Wish me luck
    Ps
    You might have noticed that housework etc isn’t on the list!!!!

    Thank you again all the support has been the glue keeping me together
    Really appreciate you all taking the timeout of your own hectic lives to post
    Xxxxxxxxxx
     
  15. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    475
    Bedford
    Wishing you luck as requested and hoping the dog walking at least gives you a short moment to relax a little and breathe. Housework can always be left.
     
  16. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    386
    Female
    South East
    I have somehow missed your threads @DesperateofDevon , have just spent some time reading them. Don’t quite know what to say o_O you have def been put through it , a bumpy road you are traveling. Can only hope it smooths out soon. You are doing a great job in caring for your parents which is a full time job in itself whilst juggling several other balls. How many more walls do we have to hit before we can get the right care for our PWD , it’s demoralising,frustrating and painful as well as time consuming . Carry on the good fight , you have and are doing everything humanly possible . Take care . Sending hugs and strength .
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    I’m sorry folks but I’ve just gone through the medical records that as POA, I am allowed access to ......& I can’t stop laughing at the ridiculousness of a prescription ... co codamol prescribed in nov 2018 to try & firm up my Dads stools??
    & no folks it didn’t work!!!!!

    so the pain relief the home insisted on giving him was to bind Dad up!!!!

    reallly ..... if it wasn’t in black & white then who would believe me!!!

    oh & the devoted wife bit.... no mention of the abuse my poor mum dished out due to her own dementia or the hoarding of years of Dads medication!!!!

    I’m shaking with rage! Totally disgusting & the home have a copy of this medical review list as it’s got their name on the top!!

    incredulous ....... roll on Monday!
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    I’m sorry folks but I’ve just gone through the medical records that as POA, I am allowed access to ......& I can’t stop laughing at the ridiculousness of a presc
    I have sent this morning collating information ... I feel in any care/ medical situation that there does have to be accountability for actions when they are repeatedly seen to be detrimental to a persons wellbeing.

    my granny used to say if you give someone enough rope they will hang themselves, which is true - but causing pain & discomfort to those who no longer have the ability to voice their issues is unforgivable. We are all human & make mistakes but to lie & try & cover them up by any means is despicable; & needs to be brought to light!

    Pass me the floodlights folks I’m trying to turn night into day at the moment !! More candles required.....
     
  19. Crafts101

    Crafts101 Registered User

    Aug 22, 2019
    40
    Dear @DesperateofDevon only now catching up with your posts - and just wanted to say keep strong and remember:-
    "The truth may often be eclipsed; but never extinguished"
    Sending you (((((((((((((((((hugs)))))))))))))))
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    thank you lovely I’m exhausted & either have insomnia or can’t keep my eyes open!

    last night my old dog which has dementia ( nicknamed dementia dog!) managed to pull the curtain rail out of the wall in the early hours!! How you ask by repeatedly rubbing & pulling against the curtains!

    so today I’m going to buy a new pair of shorter curtains & fill the holes in the wall!!
     

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