Continuing Health Care - Preparing to fight PCT's decision

in Over 50s MoneySaving
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  • Malid - As you say the 'lack of application of duty' is astonishing. One of the most interesting areas is that Social Services care managers fail to follow up on CHc funding to the detriment of their own departments funding and against their own rules. Not to mention forcing many to sell their homes to fund health care. Many would say that the distinction is irrelevant as it is all government funds. However, the PCTs in England are provided funds by central government to provide CHc funding. This funding is often not used as applications are blocked, hospital discharge proceedures are not followed and patients are not kept informed. As the funds are not ring fenced they are used by the PCTs for other purposes thus depriving the elderly and chronically sick of the healthcare funding which central government have allocated for this purpose.

    Weanie - Good Luck - It is a difficult time for you. You should be able to get a list of care home from your social services department but they are very unlikely to provide any selection assistance. We were very lucky to find a small owner managed care home for my MIL which actually feels like a home. No institutional smells, kind staff, good food. My MIL is so much happier there than in the sheltered accommodation she was in previously. Many of her paranoid thoughts abated soon after taking up residence simply because she felt safer. So my advice would be make appointments to look around several homes, you will probably know within minutes whether you like the home or not. Unfortunately the best homes will have waiting lists and it is sadly dead man's shoes to get a place. You will also need to try to match your Mum's current and potential future needs to the care homes facilities and care abilities to avoid a future move of homes.
    In a way because you and the family are shouldering the care burden it will be difficult to make an application for CHc funding. You should bear in mind that CHc funding is applicable to any care setting but you will need to demonstrate that your Mum's primary care need is medical rather than domestic. Initially you will need to involve social services and your mother's medical practitioners to decide together with the family what needs your Mum has and how these are best provided. From that point you can then open the financing issue. Social services will do their best to get your Mum to be self financing or at least contributing to her care financing. You will probably be told your Mum is not eligable for CHc funding without any formal assessment having been carried out by people who have no detailed knowledge, relevant training or authority. It is not uncommon for relatives to be told the patient needs to be at death's door to qualify. This is not the case. As soon as you mention CHc funding you will be viewed as 'difficult' simply because asssessment involves a lot of work for all parties. CHc assessment and funding is administered as you know by the PCT but you may have difficulty getting them to accept the need for an assessment. At least you are aware of the possibility of CHc funding, good luck in your quest.
  • Thank you so much - it is so encouraging to receive a direct response.
    As I say, we are very early in the process and sheer panic makes usconsideri various options as we go. It was a vaque possibility for Mum to come to my home full time and for us to sell/rent out/leave empty/buy out Mum's 50% of her own home.
    All this is to be further pondered but we feel at the moment that she requires more attention than such an arrangement could provide. For this to get off the ground even for a trial period, we have to feel confident that this would be what would suit Mum best and also that my own family could accept the disruption and the limitations of having someone with such pressing needs in our busy family home - I would also have to cut down working hours even more and I suppose we would have to apply for respite arrangements in order to have the occasional holiday.
    I have written to the PCT to ask for general advice and for a list of criteria and we are going to speak to the doctor again next week. We will aslo be speaking to a social worker and trying to judge the level of support or otherwise from various consltants as we go.
    One irony that occurs to me is that we have declined certain medical interventions which would have further supported our application on the basis that Mum's mental state suggests to us that the questionable benefits are outweighed by the worry and further confusion these procedures would cause.
    As has been said before, I have tried to absorb information froma variety of sources, but this site has provided a much more understandable format and the messages from yourself in particular have been real gems.
    Thank you so much
  • You might find this site useful for background and different experiences of the various systems.
    http://www.gpss.tripoduk.com/nhscare/
  • malidmalid Forumite
    360 Posts
    Hi Monkeyspanner

    Your advice and site referrals are invaluable and I cannot thank you enough. My aunt has just received a 'contract' from the Nursing home which she is required to sign. I have stopped her signing to date but will now ensure that if she does she includes the statement - without prejudice; all rights reserved; see www.nhs infocare

    We did feel that my uncle was rushed out of the community hospital at the end; even though he was under strict barrier nursing. It was a case of chose where you'd like him to go (we were given 24 hours). There were no places in our first choice but more importantly it wasn't considered to have a suitable nursing provision. If we hadn't chosen a second option quickly (in an appropriate category), he would have been sent to wherever there was a bed available. We were forced into acting quickly and he was moved out within the week. I now feel quite guilty that I hadn't looked into all this earlier but it is quite difficult and time consuming and my priority was supporting and looking after my aunt and helping her with daily visits to my uncle.

    I am trying not to be cross so that I can be measured and polite yet assertive when I pursue this; it is quite a challenge though I have to say because of the whole unfairness of the situation.


    Weanie, did you mean Lasting Power of Attorney LPA) as opposed to EPA? My understanding is that the EPA (unless previously in existence) no longer applies. I have just registered the LPA for my uncle but will have to wait 6 weeks for it to be processed. Good luck with your endeavors.
  • Malid - It seems we have spent the last 12 months looking for the positive angles.

    With regard to your uncle's hospital discharge if the rules are similar an initial CHc checklist should have been completed by a suitably qualified medical staff member and you should have been informed of the results and allowed to comment, and if not satisfied allowed to request a full assessment. On the positive side if these proceedures were not followed then you will have more grounds on which to complain about your uncle's discharge. It seems standard practice to push patients out of hospital asap, and if you recall there was a press annoucement recently that hospital were not meeting their discharge targets so they are going to be under pressure to 'improve' performance on discharge timings and reduce bed blocking.

    Also if the hospital discharge had an initial recouperation period followed by a further assessment of care needs your uncle should not be expected to pay for care during this period. I can't remember where I saw this but will try to remember and let you know.

    It seems likely that your uncle will end up paying for part of his care, at least until you hopefully obtain CHc funding. Payments are covered by CRAG regulations and here is a link to current CRAG regulations, once again, new draft regulations have been published and you can link through to this new draft.
    http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_073650
    on the positive side of this the fees arranged at the care home by the council will probably be significantly lower than if your uncle was arranging his own care home contract.

    This site also has some good factsheets on care home funding
    www.counselandcare.org.uk

    If you obtain a retrospective CHc award you should get interest on the money paid and reasonable expenses e.g. travelling to assessments and panels, telephone, postage etc. So it is worth keeping records. Some awards I have seen just include a % mark up to cover all this.

    Is your uncle in receipt on Attendance Allowance? This is a non-means tested allowance payable in one of two levels (higher level was £64.50 per week in 2007-8) and would still be payable if your uncle is not in receipt of CHc funding except during hospital admissions. AA is still payable for the first 28 days of CHc funding or hospital admission.

    I wish you luck with your efforts to stay calm!
  • Monkeyspanner - thanks for the further references - I will also follow them up

    Malid - you are of course correct about the LPA. We have only just received this at great cost of time and funds. The Office of Public Guardianship is swamped by the weight of these new applications and solicitors are only just getting their heads around the applicaion itself. We were unlucky in that it was our solicitor's first and the form was not checked properly and some minor error [a box not being ticked] was not spotted and the appliction was sent off by the solicitor and a lot of time was wasted. Our second appliction was in April and the permissions granted mid August. I rang the office several times and was eventually told that my application would be looked at by the person in charge to see if it could be presssed forward and my details were taken but no-one phoned me back and no speeding up was evident. good luck with this one.
  • malidmalid Forumite
    360 Posts
    weanie wrote: »
    Monkeyspanner - thanks for the further references - I will also follow them up

    Malid - you are of course correct about the LPA. We have only just received this at great cost of time and funds. The Office of Public Guardianship is swamped by the weight of these new applications and solicitors are only just getting their heads around the applicaion itself. We were unlucky in that it was our solicitor's first and the form was not checked properly and some minor error [a box not being ticked] was not spotted and the appliction was sent off by the solicitor and a lot of time was wasted. Our second appliction was in April and the permissions granted mid August. I rang the office several times and was eventually told that my application would be looked at by the person in charge to see if it could be presssed forward and my details were taken but no-one phoned me back and no speeding up was evident. good luck with this one.

    Hi Weanie, Just noted that you are working through a solicitor. You don't need to when dealing with isses such as LPA. I have done all this myself so at least the cost is limited to the £150. Crossed fingers that the form was correct - I'll keep you posted.

    Monkeyspanner - uncle was in receipt of higher amount of AA but this stopped after 4 weeks in hospital. Will post an update on events later today.
  • malid wrote: »
    Monkeyspanner - uncle was in receipt of higher amount of AA but this stopped after 4 weeks in hospital. Will post an update on events later today.

    As your uncle is now out of hospital you can ask to have the attendance allowance reinstated, from our experience this could take some weeks. If you are successful with CHc any AA payments whilst in the care home will be deducted from your retrospective CHc award. Your uncle is still entitled to the first 4 weeks of AA under CHc funding. (possibly not if awarded from discharge as they may view hospital-discharge-care home as one contiguous event)
  • I would be grateful if anyone can advise me on preparing for a review meeting for Mums CHC. My Mum is 81 and lives alone and was diagnosed with Lung Cancer, COPD, first stages of Dementia and Paraphrenia in December she was discharged from hospital in February as she did not want any further treatment. We were able to secure an excellent care package as it was felt Mum did not have long to live. She has amazed everyone as she is still here, I was informed yesterday that they want to review Mums care package, I have a feeling that they may want to reduce it considerably, she also has leg ulcers and some continence problems. How can I prepare for this meeting to ensure that I have all the facts as I may have to fight for care for Mum

    Many thanks
  • Hi pmrita
    -Was your Mum discharged to a care home or to her own home?
    -Is this a CHc funding review with the PCT or a care package review?
    -Would I be right in assuming that your Mum was awarded CHc funding on the basis of end of life care?

    If it is a CHc funding review in England you can familiarise yourself with the decision support tool criteria this will help you look at the various assessment areas. Here is the DST link.
    http://www.dh.gov.uk/en/SocialCare/D...care/DH_073912

    The national framework for CHC this document gives the background on which the DST is based.
    http://www.dh.gov.uk/en/Publications...ance/DH_076288

    A commentary on the new CHC national framework from The Association of Directors of Adult Social Services on page 5 of this document it talks about the need for a consistent use of the DST and the number of highs mediums etc which should constitute a primary health need.
    http://www.adass.org.uk/publications...commentary.pdf


    If it is a care package review do you know what the medical prognosis is and is it different from when your mum was discharged from hospital? Who is conducting the review and are they appropriately trained?

    Hope this helps and good luck.
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