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Thread: PEG Feed Query

  1. #1
    Forum Member Cookewitch's Avatar
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    PEG Feed Query

    We've been to the hospital today and Dad is going to have is PEG fitted shortly. One question we forgot to ask when there was where do we get the liquids and feeds for the PEG and any idea on how much they will cost?

    Thanks

  2. #2
    Forum Member john's Avatar
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    Hi Cookewitch,
    My wife was supplied with everything she needed on a monthly basis by an organisation called Nutricia. They even employed a nurse who did home visits to deal with instructions and support. The liquid feed was delivered every 4 weeks based on the dieticians calculation of needs. There was no costs so I supposed it was part of the free prescription process.
    John

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    Hi John. I am interested in your comment about 'free prescriptions'. I have been told by my doctor that mnd sufferers still have to pay!! Am I missing something? Regards Alan

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    Hi, my father also has MND and has a peg feed. Like John said previously, my father also gets all his liquid feeds plus all other medication on prescription for free. I would definitely query your doctors statement.

    J....

  5. #5
    Forum Member john's Avatar
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    Hi Alan,
    There was a declaration choice on the back of each prescription which I signed on Irene's behalf every time I collected her prescriptions saying that Irene was suffering from a terminal illness (I think) and we were never charged for any of her prescriptions. The chemist is a friend but I don't think he was doing any special favours. Some doctors prescribe their own drugs so you may never see a form but if you can get your hands on one I think you will find you are in a category that does not pay. It may be that the rules have changed since Irene's time.
    I will try and research on the Internet. She was 57 at diagnosis and 59 when she died and so she wasn't exempted as a pensioner.

    John
    Looking on the NHs website it says you can have a medical exemption certificate if you cannot go out unaided because of a disability and your disability is permanent. It may well be dependant on your present state of health. I would chat to your GP or your neurologist if you think you would qualify on these grounds.
    Last edited by john; 1st October 2013 at 20:45.

  6. #6
    Forum Member Cookewitch's Avatar
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    Thanks, Dad is over 65 so prescriptions are free.....

  7. #7
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    A Dietician came out after Mick had his fitted an organised a company to bring out a peg feeder machine, who demonstrated it to me and let me have a go at setting it up on dummy runs until I was comfortable, they then arranged the first delivery of food and now they fax our doctor on a monthly basis, after ringing me to check how much stock have left letting me know when the next delivery will arrive hope that helps x Ang

  8. #8
    Forum Member Cookewitch's Avatar
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    That's really helpful, thanks Ang.....looks like it should all be quite straightforward....fingers crossed!

  9. #9
    Forum Member Terry's Avatar
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    Hi Alan;

    I think that we do not automatically qualify for free proscriptions there is a side door on the form that allows us to have them eventually. I can't remember the details know but I can look into it if you can't find the information.
    It is crazy that most cancer people get them free and maybe for five or so years after it has been stopped and yet us can't get it straight away without a fight and we have little hope of our decease being stopped.

    Let us know how you get on, Terry

  10. #10
    Forum Member Terry's Avatar
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    Hi Alan;
    I just had a look and the Medical Exemption Certificate states as one of the qualifying criteria:-
    a continuing physical disability which means you cannot go out without the help of another person;
    Take this to it’s extreme, I could then drive and walk unaided but I could not put my socks on. So this meant that I needed help of another person.
    Regards Terry

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