Continuing Health Care - Preparing to fight PCT's decision

in Over 50s Money Saving
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  • malidmalid Forumite
    360 Posts
    Yes he is in Wales. I think that currently the payment will be made up of a contribution from social services and the nhs. We're waiting to find out. I am assuming that my uncle's payment would be any income he has (allowing him to keep the £25? a week pocket money) as his savings fall significantly below teh £19,000 minimum payment threshold.
  • If he is fully funded by CHC he will keep all his pension. Re-reading your post it sounds as though you have a good case for CHC, mainly on complex and unpredicablity criteria. I would imagine that NHS are funding his nursing element and SS are covering 'bed and board' element at present. SS will be as keen as you for him to be fully funded by CHC so do get his Care manager/social worker to chase it up. CHC will turn down due to any small point they can find, so make sure you are present at the CHC assessment as you know about his behaviours.
    :rotfl:Ahahah got my signature removed for claiming MSE thought it was too boring :rotfl:
  • It looks very much as if your uncle is in need of 'nursing' and not simply 'care'. Someone else on another thread put it very well - if a person goes into a residential care home it's assumed that the 'care' they need is such that an unskilled but well-meaning although non-medically qualified person would provide, a family member (although not one who is 84 and frail herself, perish the thought!!)

    Where skilled nursing is needed then that should be paid for by the NHS, because that's what you get when you go into an NHS hospital. For example, my DH is an insulin-using Type 2 diabetic, has been since 1981, and he manages his condition himself with insulin injections and blood-glucose tests. However, when he's been in hospital for knee surgery they insist on coming along and doing the blood tests for him 'because it's nursing'.

    Your uncle seems to be in a similar (although far worse) situation. He needs nursing, and that comes out of the NHS budget. A person in an NHS hospital gets to keep all his state pension, although he may lose his Attendance Allowance if that is being paid (reason: he no longer needs to pay someone for his care, in hospital he's getting it free).

    I know what you mean about the skin on the legs. DH's breaks down for no apparent reason and he has to be careful e.g. doing things in the garden. We've just come back from holiday and we ended up buying Mepore dressings in an 'Apotheke' (pharmacy) in southern Germany.
    [FONT=Times New Roman, serif]Æ[/FONT]r ic wisdom funde, [FONT=Times New Roman, serif]æ[/FONT]r wear[FONT=Times New Roman, serif]ð[/FONT] ic eald.
    Before I found wisdom, I became old.
  • Hi Malid
    First of all your experience is not unusual, and you are on the right track. Social workers are not trained in CHC assessments and are not usually aware of the assessment criteria. There is a general assumption both in social services and medical circles that CHC funding is virtually impossible to obtain and people are either not informed of the posibility or detered from applying.

    An initial checklist should have been done on your uncle prior to hospital discharge and it is considered good practice for close relatives to be kept informed and invovled in the assessment process. The patient or their representative have the right to challenge the decision making process and in the circumstance you outline a retrospective review and full assessment for CHC should be requested. You appear to have started this process but you will probably need to be assertive to get the process moving. I do not see how a 'nurse for the elderly' could think that a full assessment should not be done in this case.

    Because of the extreme variance from area to area in the awarding of CHC funding a new uniform system was introduced in October 2007 for England. I am not sure if the same system was introduced in Wales at the same time.

    The medical conditions you outline would certainly seem to indicate that your uncle's primary need is medical rather than domestic.

    CHC funding assessments look at a number of areas of need and I believe your uncle should be assessed in the high or severe categories for a number of these. Namely:

    Continence
    Cognition particularly if dislocation and inappropriate behaviour is present.
    History of falls
    Complex medical needs diabetes, parkinsons, dementia.
    Nutrition if supervision of meals is needed.
    Tissue viability.

    I am sure I haven't covered the full list. Obviously categorising the patient's need is to some degree a matter of opinion but if you don't agree with the assessment it is possible to challenge it at appeal panel.

    It is also worth remembering that a well managed need should still be assessed as a need. e.g. if your uncles parkinsonian symptoms are well managed by medication this does not mean he does not have a care need in that area and it must be assessed.

    You should ask to be present at any assessment and it is as well to inform yourself of the assessment criteria so you can argue your points with the assessors.

    Don't be put off you may have to fight long and hard to get this funding. It took us 12 months, 3 assessments, a review of hospital and medical records, 2 appeal panels, and involving the Strategic health authority to review the PCT's decisions to get a retrospective decision in my MIL's favour.

    You mention that your uncle is below the funding threshold, I assume therefore he would, if CHC is not awarded, be contributing the bulk of his income (pension) apart from the weekly allowance of about £20 towards his care fees. If CHC funding is awarded it is not means tested so he should keep his pensions. Attendance allowance, however, would cease if CHC is awarded.

    It is also worth mentioning that CHC funding can be awarded in any setting, care home, care home with nursing, or at home. Although it does not sound as though your Aunt could manage at home it might be possible to fund private nursing out of CHC funding.

    Hope this helps and Good Luck.
  • malidmalid Forumite
    360 Posts
    Many thanks to all who have responded for your welcomed information.

    My uncle has a long list of nursing needs which are complicated by severe progression of his Parkinsons and fluctuating blood sugar levels due to his diabetes. He takes a cocktail of medication four times of day; none of which he would be able to remember let alone take on his own.

    I have read trawled so many websites for information and it is difficult. This forum is the best I have read! However, it just shows how people are missing out on various benefits because nobody informs them of their rights etc. This is a case in point. I'm not exactly stupid but I have had to take the initaitive to find things out. My 84 year old aunt doesn't stand a chance!

    I have not had the expected return phone call so I shall contact the CHC coordinator again today. Monkeyspanner, the rules for England applied for Wales as well from Oct 2007 (as far as I can see).

    As far as assessment criteria:

    Continence - no control, has a catheter and has to wear incontinence protection.
    Cognition particularly if dislocation and inappropriate behaviour is present - doesn't know where he is or what he did 2 minutes ago; at times is convinced that someone is 'after him'. Has pulled his catheter out several times -causing actual trauma on occasion - and blames another patient
    History of falls - has fallen umpteen times at the hospital (and before admission)
    Complex medical needs diabetes, parkinsons, dementia - meets this criteria without question
    Nutrition if supervision of meals is needed - diet has to be managed. Extreme weight and muscle loss over the last few months.
    Tissue viability- very poor; skin breaks down with slightest knock. This is a concern due to healing problems because of diabetes.


    Again, many thanks. I will let you know how I get on.
  • Hi Malid
    Here are a couple of links you may find helpful:
    Decision support tool-this is the document that CHC assessors will fill out when an assessment is done. Although it is called a DST it is actually just a standard assessment form. There is no attached guidance as to how many highs or severes are needed for a successful application. We have been unable to get a clear answer as to how a decision is made and thus how this helps to avoid variances from one health authority to another is beyond me. Another weakness of the assessment process is that normally no consideration of medical/hospital records is made so the assessment is merely a snapshot of the patients condition on the day of assessment. My MIL's care home manager was very helpful on the last assessment as she attended the assessment with all MIL's care home records and we had obtained full hospital records (at a cost).
    http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/DH_073912

    The national framework for CHC this document gives the background on which the DST is based.
    http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/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/guidance/commentary.pdf
    The guidance in this document is spot on but is so far from the attitude that we have experienced from Social Services and their care managers as to be rediculously out of touch with the reality of service delivery in this area of local authority care provision.

    I hope this helps. There are many other documents I could point you towards but these are the main ones to consider prior to an assessment. You can also have a go at filling the DST out prior to the assessment. Please feel free to PM me for my e-mail address if you would like a contact to run developments. past.
  • malidmalid Forumite
    360 Posts
    Thanks again Monkeyspanner.

    Unable to contact CHC Coordinator today; she didn't phone back as promised this morning and when I rang again this afternoon she wasn't in work. I will be phoning again on Monday; I don't give up.

    I will have a look at all the links you hae provided and will certainly contact you if I need further support and guidance on this. At the moment, I'm trying to be optimistic as I cannot see how he could be refused. However, ever the realist, I am prepared for a battle and have no intention of letting this one go.

    Cheers
  • Hi Malid
    It appears the Welsh Assembly did not adopt the new national framework at the same time as England.
    http://www.counselandcare.org.uk/assets/library/documents/27_Continuing_Healthcare_-_Should_the_NHS_be_Paying_for_your_Care.pdf
    see page 9

    http://www.counselandcare.org.uk/assets/library/documents/NHS_Continuing_Healthcare_consultation_in_Wales_April_2008.pdf

    http://www.wales.nhs.uk/newsitem.cfm?contentid=9296

    There seems to be the intention to use the english DST but I am unclear as to what the current situation is in Wales

    You are not alone in having been kept in the dark see this newspaper piece.
    http://www.southwalesargus.co.uk/news/swanews/3680248.NHS_pays_back___100k_for_dad_s_care/

    or this one
    http://www.guardian.co.uk/money/2008/aug/03/health
  • malidmalid Forumite
    360 Posts
    Hi Monkeyspanner

    Excellent links as usual. You are right about Wales and I cannot establish what happened after consultation. From the consultation documents, it appears that the intention is to go forward with the Framework and I believe that Wales is working within the definition now. I guess the catch here may be that there is no legislation as yet. We shall see as I will be following this up with the Welsh Assembly on Monday.

    The case studies are heartbreaking. It's the unfairness that gets me and the inconsistent application of rules and criteria. However, the most appalling tragedy is the lack of information about this or the lack of application of duty to inform people of their rights. Clearly neither my uncle nor my aunt can follow this through but it is disgusting that she hasn't even been told about it. The consultation document notes the need for the individual and the family should be informed and understand the assessment process; nobody told us anything.

    Thanks again and I hope that this is useful to others in the same situation. I shall keep updating in the hope that it is of benefit.
  • weanieweanie Forumite
    268 Posts
    Part of the Furniture 100 Posts Combo Breaker
    Hi
    I am just getting to grips with the site - which is fantastic. I am also just getting to grips with how to move forward an acceptable resolution to my mother's care problems/needs. This is why I am going to have to really study past posts and look with interests at new ones.
    My mother is realtively young to have dementia - 77 but the onset has been dramatic and bewildering for us all. There was a very traumatic event which caused a lot of upset and this may have been a catalyst. She was also my father's care before he died two years ago and he had Parkinsons which was very severe in his case. My mother has her own health problems which require variety of specialist doctors appointments and drugs - Oncology, Chest clinic are only two. She requires almost constant attention at this time and most of this attention and care is provided by the family - at great stress cost to us all. We are approachinghte time when we will be unable to cope and will have to call in a review of her needs and consider care.
    After a long wait, we now hav ethe enduring power of attorney but the responsibility of this is a little overwhelming. We are also concerned about the finality of a home placement but realise that constant visiting in to her home coupled with the very demanding regular stop overs at my home are no longer going to manageable.
    In short, I will be internet searching any advice and tips aout PCT funding and any practical advice or encouragement.
    I am grateful to all the people whose messages I have read and will soon be more comfortable with using the site and will be able to contribute whaqtever I learn.
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