1. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    I have received a letter from my MP agreeing that AZ patients in care homes should receive some funding from the local NH Trust, he has written to the Dept of Health and a couple of Ministers and will let me have copies of the replies.

    Meanwhile I requested another assessmant for Mum re NHS continuing care funding, but received a phone call this morning from a very sympathetic lady, who said our NHS Trust will not fund as all her care is given by carers not qualified nurses....no surprise there, she was refused 18 months ago.

    I asked why, as AZ is not a survivable disease and the progression neither predictable or reversable, it is is not seen to be a terminal illness.

    She said she understood the problems of AZ but they were not able to fund unless Mum was expected to die very soon, in which case they would step in, but withdraw funding if she showed signs of recovery...........................the last thing we would be thinking about then would be trying to get funding!

    At my request, she is sending me the exact criteria our NHS Trust uses to decide wether or not to give funding in this area.

    All I can do is work with my MP and try to find a way to help challenge this unfair system, if not for Mum, then maybe, in time, for others.

    Meanwhile, on the registering of the EPA front, tomorrow is the deadline for my brother to put in his objections to it. I know he has to provide evidence to back up his allegations, he hasn't any as they are totally unfounded, but it is still a worry for us all.

    Maybe something will go right soon, at the moment whatever I try to do seems to go wrong.

  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Kathleen,

    Isn`t it dreadful that the only consolation we have in trying to change the system, is it might help others in the distant future.

    It isn`t until we experience the lack of funding people with Alzheimers, that we realize just how unfair it is. Unfortunately, as carers, we are usually too exhausted and emotional to put up an effective fight, and somehow are easily discounted.

    I`m really fed up of so much lip service, for that is really all we get.

    Meanwhile, I sincerely hope your EPA goes through without a hitch. It will be one worry less.

    With love
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Kathleen

    You know you're doing a good job! You're caring for your mum, fighting the NHS, sorting out the legal system, and keeping your brother at bay. What are you, superwoman?

    Seriously, I do hope the EPA goes through all right . I'm sure it will, if he hasn't challenged it yet, he must know there is nothing to challenge.

    You're doing great, girl.

  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Thank you all for your support.

    I suppose it is just one of those cycles of things going wrong.

    As one of the special needs children said today, when he only got 7 out of 40 in a test he worked really hard at.

    "I did my best, but my best isn't always as good as the others, thank you for helping me and not getting cross."

    I will take my cue from him and keep trying..........can't promise not to get cross though!

  5. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    What a lot we could learn from that child. We all feel inadequate sometimes. On a bad day, 7 out of 40 would be a good score.

    As for getting cross ............. OK, you are superwoman!

  6. lawbore

    lawbore Guest

    Next Steps

    I assume you are referring to an application for the NHS to fund your relative's continuing care. If that is so, since your assessment was refused, you now need to go to the next stage which is the Independent Review Panel and if you are again refused then go to the Ombudsman. There is also the possibility of Judicial Review in the High Court of the NHS decision.

    The first assessment is nearly always refused so you certainly should not be put off. Many many others have gone down the path you are treading.

    May I suggest you have a look at Phil Shakespeare's website:


    The core members there are experts when it comes to this subject. I am only a beginner whose mother has not yet had her Continuing Care Assessment. I am not expecting her to be given it at the first attempt.
  7. Helena

    Helena Registered User

    May 24, 2006
  8. Margarita

    Margarita Registered User

    Feb 17, 2006

    I received a letter today from the my local career royal princess trust.

    It was about a carers forum meeting they had on February 15 2007

    They PCT strategic commissioning manger –older people to talk about continuing care and NHS funded care.

    He stated by saying that continuing care ‘means .It provided over an extended period of time to a person aged 18 or over to meet physical or mental heath needs which have arisen as a result of disability, accident or illness .In order for continuing care to be implemented a process has to take place and eligibility criteria have to be meet .

    For example , before an elderly person leaves hospital a discharge care plan is prepared .This plan includes the eligibility criteria set by North West London NHS

    New National criteria are being prepared and should have been issue in 2006, they are still awaited. In order to reach a decision on whether containing care is appropriate all the professionals and staff involved in the person‘s care meets to assess the person’s mental , physical and cognitive needs and whether they meet the criteria .The person themselves and their carer must also be consulted .All the information then goes to a heath panel , which meets fortnightly . The decision arrived at is written into the persons notes


    If the patient qualifies for heath funding the process goes though. If they do not meet the criteria they then look at free nursing care .There are two levels.

    1. fully funded , paid by the NHS

    2 part funded, part funded by the PCT.

    There are three bands of nursing care, high, medium and low. Central Government are looking at their at the moment and will be issuing further guidance

    0ct 2001
    Government set out in the NHS plan to bring in free nursing care from a registered nurse for those paying all the costs of their care, sometimes refereed to as self –funded .The NHS will now meet the cost of register nurse time spend on providing, delegating or supervising care in all setting .The gets rid of the anomaly of people having to pay for care in a nursing home that would be provided free in residential accommodation or at home

    The NHS will pay for the costs of a register nurse for existing and future residents according to their needs .following an assessment by an NHS :from April 2006 , for eligible care home residents . The high band will increase from £129 to £133 per week , the medium band will increase from £80 to £83 and low band will remain at £40 per week .

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