Continuing Health Care - Preparing to fight PCT's decision

in Over 50s Money Saving
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  • My wife has acted in this capacity for my MIL since her health began to fail, but she had been given an enduring power of attorney by her mum a couple of years ago. Unfortunately enduring POAs were replaced by lasting POAs in October 2007 and this more comprehensive legal document is much more expensive to obtain. However a lasting POA does have specific healthcare sections, whilst the old enduring POA officially only covered financial and property matters.

    I am unsure as to your position regarding obtaining a POA as your Mum is already suffering from Dementia any solicitor would need to assure themselves that your mum was competant to make the decision to give you those powers and make those decisions. Obtaining a POA and getting it registered is now a pretty lengthy and expensive business and would not help you with your immediate situation. If you want to find out more here is a link to get you started. there are also several very good threads on MSE about this area which can explain the system in much more detail.

    Regarding your meeting I don't think any objection would be made to you attending and expressing your views. Whether your views are given more weight than your mum's will depend on how your mum appears to the healthcare personel attending the meeting. Has any assessment of your mum's competance ever been done?

    I do understand your concerns as my MIL pulled out all the stops and made superhuman efforts to appear as though she could cope whenever visited by the doctor or social services for years. This lead to them often thinking we were overly concerned about her, and prevented her from obtain access to services at the appropriate time. Latterly we always tried to attend visits and gently correct or add information but this could become difficult at times because MIL thought we were undermining her. It may also be useful to try to have a conversation with the assessors after a joint meeting with your mum. 'They' also have a problem in this situation as the patient's position must be paramount and you will probably hear 'but your mum wants ....' and of course you can appreciate the fine line that has to be walked.

    I'm afraid I haven't been of much help here as we haven't found a solution to this problem.
  • ErrataErrata Forumite
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    pmrita, as your mum is diagnosed with lung cancer, COPD, dementia and paraphrenia I can't think of any reason why you would not be allowed to be present. If your mum gives her permission for you to act as her advocate, and this would be best in writing, then things should be ok. If she won't give her permission, given her paraphrenia, then perhaps you could contribute by adding to her answers to any questions by saying "and do you remember mum.........." "Mum, You've also told me that............."
    .................:)....I'm smiling because I have no idea what's going on ...:)
  • malidmalid Forumite
    360 Posts
    Thursday I tried to contact the social worker again only to be told that she was on long term sick. When I asked who was dealing with her caseload, I was told - nobody unless it's an emergency.

    This is what I then did:
    • rang the Social Services complaints line, not to complain as such but to say surely someone must be able to speak with me
    • I was referred to the Head of Team (where Social Worker on sick was based)
    • I explained everything to her emphasising my concern at lack of adherence to protocols and my strong belief that my uncle was a clear CHC client. She said promised to contact the 'Nurse for the Elderly' who had dealt with his case and would ring me back in due course. She also said that obviously SS were keen for NHS to pay if appropriate
    Thursday afternoon, I visited my uncle in the nursing home and thought he was very unwell and worse than usual (he is quite bad anyway). He was fairly unresponsive, moaning and unable/unwilling to take fluids and I asked for his obs to be taken. To cut a long story short, following my concerns that he appeared very ill (I actually thought he was having a heart attack); he was admitted to hospital following a 999 call. It was confirmed the following day (yesterday) that he has had a heart attack and had suffering a hyper attack. He is not in the coronary care unit but the hospital staff are very concerned with his general condition and in particular his inability to swallow (major problem given the amount of medication he is on to control various conditions). He remains in hospital.

    Yesterday, Friday, I rang the Head of Team again to see what was happening. She had spoken with the Nurse for the Elderly who confirmed that my uncle had been assessed busy the MDT who concluded that he did not meet the criteria. I responded with:
    • why weren't we informed
    • incredible decision based on my understanding of the assessment tool
    • I will be looking ino this
    I was told that the nurse concerned was willing to look at another assessment and would include the staff at the nursing home. I then told her that my uncle was in hospital and that I wanted an application for CHC to be considered as a matter or urgency and that I would want to be included in the process.

    I am arranging to see his consultant next week and will be making it clear that I want a full assessment before he is discharged back to the nursing home. In other words, I want them to follow their own NHS protocol.
  • Hi Malid
    Sorry to hear about your Uncle. The availability of staff in the NHS due to sickness, secondment, reassignment, etc. was a problem for us throughtout this process. It is difficult to see how this system can function with the level of staff disruption. You seem to be well on top of the situation.
  • Monkeyspanner

    Once again thanks for your kind advice, I will take time and digest all the info and advice you have given me to ensure that I am ready for the "battle"
    At this stage I do not know when the meeting is to be held, but I will advise you of the outcome


    Many thanks for your advice, and I shall certainly use the phrase you have mentioned when and where necessary at the meeting.

    Kind regards
  • Hi
    Hopefully someone who has travelled this complicated procedure may be able to help us.

    My FIL is 77 and suffers from severe rheumatoid artheritis, emphasemia (excuse spelling), is wheelchair bound after a series of falls, incontinent, ulcers, bed sores etc.

    In September 2007 after being prescribed medication by his GP his condition severely deteriorated to the extent that he was found in his chair (where he had been for several days) severely malnourished, incontinent and severely twisted to one side and slumped as though he had had a stroke. We had returned from holiday and were shocked by his deterioration. He said that his GP had rung him to tell him to stop taking the rheumatoid artheritis medication. When we read up about the drug we found that persons with circulatory problems (ulcers)should not be taking it. He had been on it for about 4 weeks.

    He was taken into hospital where he stayed for about 4 weeks and then discharged. After that a home care framework was put in place where he was visited 4 times per day. During this time he relied on his walking frame as he could no longer use his walking stick to move around the house. He also then suffered a series of falls and ended up back in hospital and then on to intermediary care before being discharged home. More falls and problems. He then went back into hospital for a month and after pressure to release the bed from the hospital it was recommended by the social worker that he go into a nursing home full time. By this time he was wheelchair bound and unable to walk or get up from wheelchair or bed without assistance.He was awarded the Nursing Cost Element at the higher rate, but told he would have to fund the rest of the care himself - around £400 per week. His savings are under £20K but he has his own house - we were told that a charge could be put on his house and if it was sold or he died the PCT would claim the monies. During the first 12 weeks he was in the home he paid £400 per month (receiving nothing else) from his own funds. So far he is still paying this although the 12 week period has been exceeded - so we are wondering has the PCT forgotten or is he accruing care bills whilst we fight the case? We decided to fight the decision as we were given no paperwork and were unaware of how a decision had been reached that he was ineligible for continuous care funding. He did not want to go into the home but if he had returned home we were concerned that another fall could be fatal. We managed to get an assessment of him in the nursing home by the various medical professionals etc. involved in his case using the national framework tool in August. We were told that he was borderline and the decision would go against him. Subsequently the PCT board duly overuled all the recommendations from the framework tool. However, there was a comment about him not taking painkillers for his rheumatoid artheritis (but no explanation as to why he wasnt taking them). He is frightened to take any medication due to his previous experience. There was also another comment saying that as he was not immobile as he is capable of being in more than one position himself (despite the fact that he is wheelchair bound and cannot use his hands properly as his joints are badly swollen and he needs a hoist and is unable to walk and also cannot raise himself out of bed into a sitting position). We are appealling the PCT's decision but not sure what to do next as they are taking a long time to respond to us citing various excuses such as illness/holidays in the PCT Department.

    We are not sure whether to engage specialist solicitors, seek a medical expert to assess my father in law, or just fight the system ourselves (which is not for the fainthearted!). If anyone can suggest or give pointers it would be much appreciated.
  • When you said 'ulcers' what did you actually mean?

    Leg ulcers, or a history of gastric (stomach) ulcers?

    It's known that anti-inflammatory drugs which are commonly used to treat arthritis must be used with extreme care. My DH developed a duodenal ulcer following knee surgery - if used, these type of medications must NOT be taken on an empty stomach because they attack the stomach lining and cause ulceration. They can be taken with food, or after food.

    OTOH a person with severe rheumatoid arthritis should not be left with no pain relief of any kind! No wonder this poor man is immobile. Pain causes immobility, so pain needs to be treated.
    [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.
  • Thanks Margaret-Clare.

    My FIL has deep ulcers on his soles - circulatory problems due to heavy smoking I am guessing.
  • Hi Greenflamingo
    It seems as usual in the Continuing healthcare assessment process you have not been kept fully informed. Your experience to date is fairly typical. I am not sure if our experience will give you any comfort, but it took us 12months, 2 appeal panels, 3 assessments and a lot of effort to get a successful retrospective and ongoing CHc award for my MIL.

    You appear to be taking the right approach. Could I ask were you invited to the full CHc assessment using the Decision support tool? As your FIL should have been able to have representation.

    You should press for an independant appeal panel at the PCT this should be made up from people who have no connection with the health authority in your FIL's area. In my MIL's case there was an lay chairman, a retired senior social worker and a specialist nurse from another part of the county. You should be invited to attend this panel and be able to represent your FIL's case as you see it. If this is not successful you can ask for your FIL's case to be reviewed by the Strategic Health Authority (SHA).

    Unfortunately the SHA will not get involved until you have exhausted the appeal process with the PCT. We did find that a few assertive calls to the SHA when the PCT was dragging its feet did seem to move the process on. We were not sure if this was coincidence or if pressure was applied on the PCT.

    If you wish to involve a specialist solicitor there is one firm we know of who will do an initial review of your FIL's case and tell you if they think you have a case. Then you can decide if you wish to engage their services. They can arrange independant madical experts. PM me if you would like contact details.

    In the interim I assume that the social services are funding your FIL's care and placing a charge over his property assets. The PCT will be providing a nursing element of £101 per week. If the Social Services arranged the care home this will be better as the rate they will have agreed will probably be lower than the rate you could have arranged therefore the charge against the value of the house will be lower. If you are suceesful in obtaining a retrospective award it will be up to the PCT to refund payments made.

    I would advise you keep records of your FIL's condition including any episodes of inappropriate behaviour (agression, violence, sexual) and non-compiance e.g. refusing medication. It may also be useful for you to obtain copies of your FIL's hospital records as these may contain supporting medical evidence you can use in your appeals. The hospital will probably make some sort of charge to copy the records, typically about £50. Also keep a record of your expenses related to the CHc process as you should be able to claim these back from the PCT in the event you are successful.

    Hope this helps and good luck.
  • Thanks Margaret-Clare.

    My FIL has deep ulcers on his soles - circulatory problems due to heavy smoking I am guessing.

    Ooooops. Another reason for the lack of mobility.

    Having said that, smoking is an absolute no-no for these conditions (I'll get my coat....)
    [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.
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