Trying to get to the end of the CHC saga

Discussion in 'After dementia — dealing with loss' started by rodgedodge, Dec 30, 2015.

  1. rodgedodge

    rodgedodge Registered User

    Dec 30, 2015
    1
    My mother-in-law died about 2¼ years ago, while we were just starting a claim for refund of care costs. This was after and EU ruling which directed the UK govt. to look again at certain situations. We (my wife) and I reckoned that my Mother-in-law's case fell into the correct category, so we put in a claim. That was in late 2012, before she died in September 2013.
    Despite visits, phone calls and emails we have, basically, heard nothing. The team have moved offices, changed phone numbers etc.
    How long have others waited?
     
  2. allend100

    allend100 Registered User

    Jul 11, 2011
    48
    Leicestershire
    I noticed you hadn't had any responses and i wanted to share my experience with you. It all takes a long time, Mum never got her assessment after waiting 6 months she sadly could wait no more. So far the CHC have sent me letters with someone elses information in the envelope, sent letters to my deceased Mum and started calling her Mr. half way through a letter. All smacks of incompetence but at the back of that is the fact that they are completely under resourced and totally disorganised, even my social worker friends find the department incredibly inefficient. Speaking to the ombudsman I understand they are recruiting and trying to get on track. I returned completed forms 3 months ago and have still heard nothing, not even an acknowledgement (although I did send them recorded so at least I knew they got there) I'm now going to start chasing them and hope somewhere down the line I can get them to acknowledge that Mum deserved more support in those last few months. All I can say to you is to keep fighting if you believe that your MIL was eligible for care she didn't receive.
     
  3. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,497
    Female
    Near Southampton
    My husband died in June 2014. I had applied for retrospective funding, which was
    relevant back to June 2011, which was when he entered a nursing home, by the deadline of 31September 2012 - and also future funding.
    A year later, in September 2013, he passed the Checklist for the future funding and the date for the full DST was set for the beginning of May 2014. This was cancelled due to the non-receipt of a report from a non-existent SW.

    I heard nothing more and a few months after my husband died I rang the team and asked why I had heard nothing to be told that they should have contacted me to offer condolences! I asked what happened now - would the meeting still go ahead?
    Yes but it would now have to go to the panel with no input from myself.
    I had worked incredibly hard and spent many weeks aquiring evidence to support the application so was not best pleased to hear this.
    Would I be told the outcome - definitely.
    How soon would this happen? Very shortly and I would be given the result within a week.
    Since then I have heard nothing!

    That didn't even touch on the issue of the retrospective application either!
    I am not sure there is much point in my persuing this as I'm pretty sure it will be unsuccessful due to evidence being brushed away and will just result in more frustration and stress. However, the sheer lack of professionalism in communication as well as the injustice of the needs of someone who suffered so many actual medical problems, unconnected to the dementia, being dismissed can cause pretty similar feelings too! However, I do think that too much time has now lapsed for the reinforcing of the evidence and I don't think I have the will to fight any more.
     
  4. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
    Saffie please see whether your MP would help ... and also take advantage of any free consultations offered by the social enterprise agency Beacon Healthcare and / or specialised solicitors working in this area of law. You've been treated abominably. I'm fairly confident your CCCG is also in breach of "process" guidelines on a number of points.
     
  5. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,497
    Female
    Near Southampton
    #5 Saffie, Feb 1, 2016
    Last edited: Feb 2, 2016
    Thank you AC. I honestly don't think I now have the stamina to fight my husband's corner.
    I did it every step of the way when he was alive but perhaps it's just as well to let go now.
    There again, perhaps I'll wake up one day and find the necessary willpower to take it further.
    I'm assuming my application for retrospective funding must still be lying in some file somewhere!

    I feel I should add that I only posted of my experience because the OP, Rodgedodge, asked if others had waited for a long time, not for support myself as I know any decision about taking this further rests in my own hands alone.
     
  6. allend100

    allend100 Registered User

    Jul 11, 2011
    48
    Leicestershire
    Saffie, I have moments too when I think about not pursuing this any further and you will make the decision that is best for you. I'm not giving up yet though. I returned the completed forms in November last year and thought by Feb this year they may have got around to looking at them. Wrong!! Instead they told me a letter had been sent to me on the 21st Jan (which i've not seen yet) saying that they have closed the case because i hadn't been in touch?????? It turns out they had put the wrong returns address on the forms and i had sent them to a different team!!!! Apparently I have to sort it out as they have closed the case, they gave me the wrong telephone number (thank goodness for google) and luckily i had the foresight to send the forms back recorded so I've been able to track them down, now I'm waiting for one department to speak to the other one.
    I'm not holding my breath that anyone will do anything without me constantly following things up.
     
  7. Lancshiker

    Lancshiker Registered User

    Apr 17, 2013
    87
    I work in an organisation that deals with these claims, although not in the same department. What I'd do know is the backlog of cases is phenomenal and the organisations that handle them are limited to the number of staff they can employ because, I guess rightly but not much comfort, the bulk of NHS resource can go to frontline patient care. The people that deal with these claims whom I know work unbelievably hard taking work home at weekends to try and speed things up and receive a lot of abuse from callers who are understandably frustrated at the delay. Most of the people dealing with claims are nurses and they don't tend to have administrative support which may explain some of the confusion around messages back. My own father was eligible for CHC so I have been through the process and understand the frustrations but it isn't always as it appears. That people are sat back and don't care. I've seen people in tears over the workload. It's just so huge.
     
  8. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I have similar feelings. One of John's illnesses, similar to asbestosis, may have been caused when he worked 40 years ago, pulling cables from basements, probably thick with asbestos. But I just haven't the energy to fight it, and quite honestly, whether I got a few hundred or several thousand pounds, it won't bring John back, and would drain me emotionally - so I've let it go.
     
  9. allend100

    allend100 Registered User

    Jul 11, 2011
    48
    Leicestershire
    I'm OK with it taking as along as it takes as long as I can be confident that eventually it will get resolved. Its not about the money, as I posted I thought that it would read as though I was being quite mercenary. I think Mum deserved more support when she was alive and I feel as though I let her down when maybe it was the system that let her down and my battle is with the system not the person who picks the phone up.
     
  10. MDJ

    MDJ Registered User

    Feb 20, 2016
    4
    We also sent in our claim for retrospective restitution in September 2012. My mother was admitted to a care home in March 2004 following a hospital stay after falling at home and breaking her hip. She passed away in February 2011. She was in the care home for that whole time at a cost is £142,000.

    I wrote dozens of e-mails to the various departments in the NHS and to my MP. I made formal complaints about the lack of responce from the NHS. At no time would they commit to a timetable for completion of our claim.

    In March 2014 they carried out the Checklist Process which found in 2007 she was entitled to a full review for NHS CHC. This was notified to us in October of 2014.

    Yesterday (20 February 2016),
    ironically 5 years to the day of my mothers death, we received the Needs Portrayal document which is the step before the case goes in front of a Multi Disciplinary Team to decide if she is entitled to CHC. This meeting is scheduled for 21 March. The document is 57 pages long and full of medical terminology.

    It has taken literally hours and hours of research on the Internet to follow advice from various sources to try and advance our claim. Whether this has made any difference I really don't know, and I am certainly not confident of success when reading the problems others have experienced.

    However, the delays and lack of information that the NHS have responded with has made me more determined to see this through to a successful conclusion.

    Not sure if this helps, but is our experience of how long it takes.
     
  11. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
    Just to say good luck ... and you deserve to win, even if it's just on the grounds of your being willing to fight "the system" for as long as you have!
     

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