1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    131
    Female
    My father was in hosp and then community hosp in 2017 after a suspected TIA. They promised ALL the above, plus SALT (speech therapist for speech & swallow), plus capacity assessments. Then he was discharged, none had happened, I was promised by the social worker and hospital these would be done at home.

    Fast foward a few months, and NONE had been done (plus there were carer issues) so I went a bit nuts and emailed (LENGTHY emails) all the relevant people. Adult safeguarding via social services got involved. Got some things done and sorted. 2 years on, we JUST about were at the point where things were running smoothly.
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    ......wish I’d rung them direct before.

    Same lovely people that helped me with Dad.

    Aged mother sent to them in 2014, assessed as early stages of dementia & early symptoms of Parkinson's.
    Fact it’s on there medical notes, letters sent out etc...
    They had expected to see Aged mother again within the year but no...
    imagine their surprise when 5 years later I’m chasing the appointment expected as we believed that GP had referred Mum & so had the community nurse .... after all we have email saying it’s been done
    Nada. Nien. Nothing!!!!!!!

    Imagine their horror when I explain Mums symptoms & my shock that a team was already in place in 2014 to ensure neither Aged Mother Or family are put repetitively through this Groundhog Day of hell!


    So I hope finally that someone somewhere will be able to give my Aged Mum some dignity in the last stages of her illness, because it was kindly pointed out that the Dementia team will sort out carers & requirements , i might get a chance to just be the daughter who can actually sit & hold her Mums hand.

    Until Mums mood flip flops that is!!!
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    I have a feeling that it’s too late to benefit Mum. I’ve cried all night - how can professional clinicians do this & not realise that eventually the truth will be revealed.
    Am hoping finally that the dementia team gets Mum back in the system again quickly
     
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    456
    Oh my !I can see why you are raging.I would be too.....All care companies are requested to ring in using the clients phone (doesn't cost the client anything)They have a pin number to use so the computer knows where they are.It is County Council policy,so people are billed correctly.Same going out....So much for you being able to step back.....Re@GP Any GP can go from the surgery.Another one may have picked it up as hers seems totally inept!.If care company not doing it why not?...
     
  5. TNJJ

    TNJJ Registered User

    May 7, 2019
    456
    That GP needs to be fired! I certainly would put in a complaint.!
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    Have done with CQC
    Chocolate teapots comes to mind have emails from CQC asking me to take it further with parliamentary body!
    Arghh!!!
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    I’m adopted , & my biological mum passed away last year of cancer. It was horrendous, & yet I would rather my Aged Mother had this dreadful disease than Dementia.
    Why?

    My biological Mum never had her daughter desperate to get antibiotics, or treatment, I never cried to clinicians begging for a diagnosis & help. I was never asked by health practitioners to do fill a care need because of cost or availability. I was never passed from pillar to post & back again in search of answers to health issues. I never had to chase up carer package issues, or buy the incontinence pads or pants that were required. I was never made to feel that my concerns about my biological mums health were those of a irrational hysterical & baseless position.
    No neighbours rang week after week with welfare & safety concerns. I didn’t have to ring social services begging for help. No one ever said to me you will have to step back so that Social Services, GP etc can see the reality of this illness.
    This lovely lady who I knew for 20 years, was allowed to have dignity along with all her family & friends when her life was drawing to a conclusion.
    I’m lucky I’ve had two Mums, but the end of their lives, my family & others experiences are polls apart.
    There is no dignity in dementia without the appropriate support

    That’s why I wish it were different

    how very sad
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    Care company are doing all they can to support me, & have stated that GP isn’t helpful.

    Funnily enough Mums social worker can get her into a care home but I have an email saying that she can’t reinstate 4 th visit! Also had I thought about going private to get a diagnosis?Duh!!!!
    Thought these were meant to be intelligent people - need GP referral!!!
    Imagine the response I got got when I told her I’d filed a report with the CQC?????
    No ...
    well she said I’m ever so busy at the moment maybe I need to allocate your Mum to another social worker???
    Nice!
    If I didn’t have a paper trail no one would believe me!!

    Hateful people to take advantage of those without capacity or means to question this!
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    I’m so sorry you have experienced this - I’ve exhausted everything apart from Parliamentary Health Service Omnibudsman.
    I actually don’t have the energy to go through this again & again.....
    just want to be a daughter to my mum
     
  10. TNJJ

    TNJJ Registered User

    May 7, 2019
    456
    I don’t know why a lot of people work in care.,as some of them are the most uncaring types you could ever hope to meet.!It is just as well you email so at least you have a record.I do the same and phone as well.I always double check but they never seem to.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    It’s ridiculous how totally incompetent some are - it’s a few rotten apples in a big barrel. The carers who come in are more informed & aware than SW & GP!
    Inept is a polite way of putting it!
    Can’t believe Mum had been flagged in 2014 with Parkinson’s & dementia!! GP did nothing... repeatedly.
    Please let there be a god of some sort !!!

    At least now someone somewhere might actually do something.
    Bit of a house of cards though, with huge fall out.
    Think society is so used to this sort of thing that it becomes immune to it until it hits a personal level.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,536
    Female
    South coast
    Oh my........... I have just picked up the whole sorry saga from last night and today :eek::(:(:(

    I would say it is unbelievable, but Ive heard other similar stories.
    Im thinking the crisis has come and I do hope it now gets sorted out.
    (((((((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    I’m so angry, how can all this be allowed to happen???
    My Mums GP is the equivalent of a bored teenager who reluctantly works, so chews gum, gossips and stands around picking their nails & ignoring the job they hey paid to do!!!
    I hope I’ve done the right thing in telling people I’ve reported it to the CQC??
    Just desperate...
    funny the response from SW....
    got email to say that she’s visiting Mum on Friday 10am..... shame-she didn't read the emails saying Mums in hospital on Friday & we need be early as holiday traffic means it will be a hour plus journey & therefore Mum won’t be available for long to go through the email I sent the SW & discuss it with the social worker!!

    At least we will be present- hope OH has his no tolerance for bull mojo charged up & ready!
    I really don’t want to speak to this SW, I wish she would allocate Mums case to someone else!!
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    In the light of day the reality of all that’s happened seems bleak & worse - think now that adrenaline rush has gone the enormity of it all has hit!
    I want this “hell” to end .... maybe the mental health team now after uncovering so many issues might make some progress, but it’s not going to be of benefit to Mum the PWD who has been a pawn in all of this.

    Mums blood sugars are off the scale but nothing is done. Signs of her tired mind & body slowly shutting down.

    I think fluctuating capacity is the pits!!! Poor Mum is aware occasionally of the issues etc then flip flop back we go.

    Unconditional love is all I’ve got left now to give her. I’ve followed this path as best I can but the way forward is barred to me.
    I accept that & understand that the systems in place fail some; while for others - those will be people who don’t post on here .... they do exist- the experience is painful but they are supported!

    Again politics, policies etc are not helping the forum surfers for help & answers.
    At base level I’ve done everything I could to prevent “this crisis “ but my heart breaks for my Mum who has been let down by those who were meant to help & protect her. The fact that this isn’t an isolated story is heartbreaking in itself. The fact that this debacle of ineptitude & arrogance shown towards a PWD means that persons health has deteriorated to this point & it took more than one person to achieve this I find stomach churning.

    I’m numb with shock .. I can’t function so I thought I’d try & put it down & share it with the ether! The ether has replied previously & given balm for my worries, no answers this time I expect but at least the truth is out there.... one day all this might change.
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,149
    Um I don’t know anything about this.. will have to follow up at some point .....
     
  16. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    131
    Female
    That's interesting - my father's care company don't do this! Never have!
     
  17. TNJJ

    TNJJ Registered User

    May 7, 2019
    456
    I used to work in the community and my company has to comply if they wanted the council contract.My dad's care company do the same.People are billed by the minute .
     
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    456
     
  19. TNJJ

    TNJJ Registered User

    May 7, 2019
    456
    Is the Practice still in Special Measures?
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    I wish I could post something to help @DesperateofDevon.

    What you are experiencing is way out of my experience but it does sound as if you are verging on carer breakdown which is within my experience.

    We know the services are suffering oversubscription and underfunding and banging on closed doors is unlikely to open them.

    I can only hope someone will listen to you.
     

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