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  • bad treatment under the NHS!

    [bad treatment under the NHS!]

    Author: John (---.cache.pol.co.uk)

    Date: 12-19-02 12:56

    AS a new vister to your website I would like to bounce some things off you. I am being treated like a liar by all the medical profesion. I suffer from Hypertrophic cardiomyopathy and can have terible pain in my chest arm and neck. I also suffer from blackouts and find my self tired at the littlest thing. I have been under a doctor for my heart since 1998 after my heart went up to 320 bpm and stoped. Wolf parkinson White syndrom was found to be the cause. I had an opp to cure this and lived happily for about 18 months then i began to suffer the aboue symtoms. I was not taken on by anyone and a year ago, after much effort on my part i was given an echo. But nothing was said until i ended up on I.C.U in Ormskirk hospital. I was then told i had hcma and to look on the web if i wanted to know about it. I was then told to get some pain paracetamol from the cemist for the pain. I went home thinking everything was ok until i got a letter from alderhey childrens hospital for my sun to undergo test for the same. When we arrived it was then that a kind cardic nurse explained to me the dangers and problems of hcma.

    2 months later i am having to go through lawyers to force them to treat me right. I have been told by a hospital spokes man that there is a new drug but only privet patients get to have it.

    what a ****ing mess this world is.

    J singleton

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    [Re: bad treatment under the NHS!]

    Author: John (---.cache.pol.co.uk)

    Date: 12-19-02 13:02

    Sorry about my spelling!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: bad treatment under the NHS!]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-19-02 13:19

    Dear John,

    Welcome to the board. We hope you keep on posting here, but you should get in touch with cardiomyopathy.org as they are the UK-version of the HCMA. The late founder of the Cardiomyopathy Association helped Lisa found the HCMA.

    They can help you navigate the intracies of the UK system much better than we can. However, we will certainly give you all the support and answers we can.

    I'm very sorry you have been jerked around and it happens to almost all of us at least once. Please read older posts to see what I mean.

    Please have your son tested asap as it is genetic.

    Hang in there,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: bad treatment under the NHS!]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-19-02 13:34

    John,

    I can hear the frustration (but please watch the language we do have kids out here

    I am not sure where you are in the UK - I can suggest highly that you contact the Cardiomyopathy Association, there # is on the membership page of this website. Dr. William McKenna and Dr. Perry Elliot are at St. Georges in London and are very highly respected and you should have access to them in the NHS.

    Your symptoms do sound as if they require prompt attention. Take a deep breath, pick up the phone and call the CMA office Friday morning, they will help you get in touch with the correct people.

    Best wishes!

    Lisa

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    [Re: bad treatment under the NHS!]

    Author: John (---.cache.pol.co.uk)

    Date: 12-19-02 13:51

    Thankyou and sorry.

    It isn't that easy over here to get to speak to anyone. Unless you have more money than elvis youcan wait until the end before someone says "Well he could of and if and why? "

    Sorry about the Language. Just abit worked up

    ThANKS again

    john

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: bad treatment under the NHS!]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-19-02 14:08

    Completely understand....more then you think

    I am glad you have found a place where we really do understand what you are going through.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: bad treatment under the NHS!]

    Author: Amy (---.proxy.aol.com)

    Date: 12-20-02 03:53

    John,

    I have responded to your posting on the U.K. site.

    Best Wishes,

    Amy WIliams

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: bad treatment under the NHS!]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-20-02 04:16

    Amy... side note...my x-mas card to your family was returned...I forgot the extra postage! It will be there soon!!

    Lisa
    NOTE: This is a post from the previous forum message board.
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