Continuing Health Care - Preparing to fight PCT's decision

in Over 50s MoneySaving
776 replies 182.1K views
Long Story so I'll try to keep it short.

My MIL (age 84) was hospitalised for 7 weeks after a fall in July 2007. The family were advised to look for a care home as in their medical opinion my MIL could not return to her sheltered accommodation due to a high risk of falls and the council's care team being unable to provide the frequency and timing of visits required to meet my MIL's revised medication regime.

The family were not made aware that a continuing health care checklist had been performed on my MIL prior to discharge in September and in fact all of us were completely unaware of the CHC system. The checklist concluded that a full CHC assessment was not necessary in my MIL's case. Had we been made aware of this decision as we should have been we would have challenged the decision at the time.

My MIL had at the time of discharge:
Diabetes (type 2)
Parkinsons Disease (meds beginning to 'wear off' requiring supplementary meds)
Acid reflux (previous hospitalisation due to near fatal gastric bleeds in 2005)
Cognition problems (dislocated in time and location)
Severe short term memory loss
Paranoia (the medical staff were trying to poison her)
Severe Mobility problems
Circulatory problems due to beginnings of heart failure
Vascular Dementia

This combination of problems requires 9 different meds to be given at 7 different times in 14 doses, timing is critical. She has been unable for some years to manage her meds and would not be able to list her medical conditions if asked.

Shortly after discharge in September we 'caught up' with the possibility of CHC and after some weeks persuaded the CHC team to assess my MIL in December. At this time we were assured that the assessment would be carried out as though it was done at the time of her discharge and we subitted a letter in support of our application. Predictably the CHC application was declined.
We have since discovered.
-The assessment team and lead nurse who prepared the case for consideration by CHC panel did not take our supporting letter into account.
-The assessment was prepared in relation to MIL's condition at the time of the assessment and no regard to her condition at the time of discharge was made.
-There was no social services input into the assessment even though the new assessment framework says there should be.
-The contemporanous notes of the assessment teams are routinely destroyed when the assessment is 'typed-up' by the lead nurse (who did not take part in the assessment) so there is no way of seeing what the assessors actually wrote during the assessment.
-The assessment prepared by the lead nurse was 'altered' by the CHC panel.

Since this application was declined we have been asking for the official appeals procedure but this either does not exist in my MIL's area or the CHC team is unwilling to provide it. We have persuaded them to do a retrospective assessment for the period from discharge to the date of the declined assessment and to submit the declined assessment for 'peer review'. This may take some time as we have been told only retrospective reviews that relate to deceased claimants are being dealt with at the moment and that some of these date back up to 8 years!

It seems that anyone who is in a care home is automatically assumed not to have a significant medical need and that anyone who is self-funding (my MIL has modest savings from the sale of her property) goes to the bottom of the priority list.

We have also approached the PCT and SHA to inform them we wish to appeal but cannot find out how to, and we have also tried Age Concern and Altzeimers Society.

Thanks for reading this far.

We would be very grateful if anyone can give us some pointers on:
-How to progress from here.
-Specialist legal practises who can help.
-Where we can obtain an independant medical assessment in support of any appeal we mount.


  • ErrataErrata Forumite
    38.2K Posts
    10,000 Posts Combo Breaker
    Since this application was declined we have been asking for the official appeals procedure but this either does not exist in my MIL's area or the CHC team is unwilling to provide it.

    Have you got your/your mum's MP in on the action? I'm sure there must be an appeals procedure. CSCIE will be able to tell you, their number for your area should be on their website. HTH
    .................:)....I'm smiling because I have no idea what's going on ...:)
  • Yes we have involved MIL's MP. His response was 'I hear this all the time, it's the usual tale of woe' he did write a few letters got several obstructive replies and then got diverted onto the process of choosing a new leader.

    Is CSCIE the Commission for Social Care Inspection? If it is thanks for the suggestion I will have a look at their web site.
  • ErrataErrata Forumite
    38.2K Posts
    10,000 Posts Combo Breaker
    Sorry, yes - CSCI. They may not be able to help but they may be able to point you in a useful direction.
    .................:)....I'm smiling because I have no idea what's going on ...:)
  • We have been informed that my MIL has been awarded Nation Health CHc funding from 7 months after being discharged from hospital.

    The CHc Panel decided there was insufficient evidence to award for the first seven months of MIL's residence in a care home. The primary reasons for the lack of evidence was.

    -3 months delay to an initial assessment due to being passed around the system and discharge priceedures not being followed.
    -We appealled the first assessment as it was inaccurate and did not reflect MIL's medical condition, and a reassessment did not take place for a further 3 months.
    -A retrospective review of MIL's medical status for the first 3 months after discharge was carried out but not submitted to the CHc panel.
    -Our submissions to the assessment process were either ignored or not taken into account.

    We will now have to appeal the decision re the first 7 months based on the fact that proceedure has not been followed in a timely and open manner. But at least we have an award ongoing until the next CHc reassessment.
  • Well done monkeyspanner and good luck for future progress.The system will never change unless people like you are willing to challenge it.

    Good to see that persistence pays off. :)
    Trying to keep it simple...;)
  • Just a quick update. The PCT have capitulated and have agreed to pick up funding from my MIL's discharge from hospital which is great news. If anyone has queries regarding Continuing healthcare funding for a relative or friend we would be happy to try to help. Thanks for all the past support.
  • newmeenewmee Forumite
    395 Posts
    I'm glad you have got some resolve. Think of those poor people who have nobody to advocate for them, as your MIL has. I'm afraid those who shout loudest,'s the only way. I know it shouldn't have to be but you have to fight for everything these days in terms of recievibg a service, be that social or healthcare. Hope MIL is getting on well and you can breath a temporary sigh of relief!

    by the way what a cool word capitulated is !
    The greatest gift you'll ever learn,
    is just to love and be loved in return
    Nature boy - Eden Ahbez
  • :jThat's terrific news, well done. So the message is, be persistent, don't give up.
    Trying to keep it simple...;)
  • malidmalid Forumite
    360 Posts
    Just a quick update. The PCT have capitulated and have agreed to pick up funding from my MIL's discharge from hospital which is great news. If anyone has queries regarding Continuing healthcare funding for a relative or friend we would be happy to try to help. Thanks for all the past support.

    All this information has been extremely helpful but I may need more.

    My 79 year old uncle was admitted into hospital in May 2008. He was being looked after at home by my 84 year old aunt but his health was deteriorating so badly (and hers through looking after him without any 'official' support - only from my sister and I). He has:

    Diabetes (type 2) - his skin breaks down at the slightest touch and he is now covered in padding and bandages where he has knocked himself on the bars f the bed
    Parkinsons Disease - severe

    Has a permanent catheter due to prostrate/urinary problem
    Severe cognition problems (dislocated in time and location)
    Severe short term memory loss - which has deteriorated significantly since being hospitalised
    Severe Mobility problems - cannot walk even with the aid of a walker (could before being hospitalised); cannot get up from a chair - has to be hosited; however, during constant periods of restlessness during the night, tries to get out of bed. Bed has to have padded bars
    Circulatory problems/Chronic neuropathy - feet being treated by hospital chirpododist for 2 years

    Suffered a heart attack in 2007
    Extreme restlessness at night and has to be watched constantly (he fell some weeks ago - during hopitalisation and broke his hip which is now pined)

    Appears to be very depressed and also becomes verbally aggressive when agitated
    Hallucinates and becomes agitated

    Nobody has ever mentioned NHS Chc to us.

    At a case conference some weeks ago, we were informed that he needed 24 hour care. My aunt was eager for him to come home and to have support to care for him; however, we were told that there was no night care available and she would have to manage on her own. This was totally impossible, she is frail and elderly and would not be able to manage. Reluctantly, after much family discussion, it was agreed he would need to go to a residential home. Since then, the nursing staff emphasised that he needed a high level of specialist care and would need a certain category of residential nursing home.

    To cut to the chase, I have now completed the financial assessment forms but have not had any response as yet (he is below the minimum threshold) and my uncle went into the nursing home last week. I am now trying to establish if he is entitled to NHS continual funding. I spoke with the social worker yesterday who said that the 'Nurse for the Elderly' had deemed that he wasn't entitled. I challenged this and it was suggested I contact the Residential Home to see what they thought. I didin't think this was the course of action to take so I have contacted the Local Health Board and spoken with the Chc Coordinator. She is looking into the case and will get back to me (she said that if he is getting a 'nursing' element to the payment - which I think he must be - they will convene another assessment if necessary).

    Have I done this right? Do people think we have a good case here?

    If this is approved at some point, does this mean that my uncle won't have to contribute his state and occupational pension?

    Many thanks in advance for any responses.

  • Malid, is your uncle in Wales too?, as the rules are different there. Are you paying for his care at present?
    :rotfl:Ahahah got my signature removed for claiming MSE thought it was too boring :rotfl:
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