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BBC Health: 'My illness is so rare it doesn't have a name' - new Welsh clinic for nameless conditions

Discussion in 'Other specific illnesses' started by MeSci, Oct 25, 2022.

  1. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK
    This article mentions the fact that there is too much specialism so that people are seen by numerous 'specialists'. For example:

    "As an 11-year-old being told the tests aren't showing anything and your parents are hearing that, there's no thoughts the doctors are wrong because they've done all these tests, they are the doctors, they know. So the diagnosis must be that I've made it up."

    and the oh-so-familiar finding:

    "They didn't find much wrong so put everything down to being psychosomatic or depression and anxiety."

    Previously Debbie had to rely on several specialists to manage her various conditions.

    "But they're different teams that stick within their specialty," she said.

    "They don't look at me as a whole person and my symptoms as a whole, which is what this new clinic will do."...

    The new SWAN (syndromes without a name) clinic at Cardiff's University Hospital of Wales can be accessed by adults and children across Wales through a referral by a hospital doctor - with an estimated 150,000 people in Wales affected.

    "Rare diseases are a significant health problem that are unfortunately associated with poor outcomes," said Dr Graham Shortland, clinical lead for the new clinic.

  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    North-West England
    No suprise that mitochondrial disease is involved. I think this will be a big theme going forward. Totally overlooked.
    Amw66, alktipping, DokaGirl and 4 others like this.
  3. Wonko

    Wonko Senior Member (Voting Rights)

    Also not surprising that the number of doctors who seem to think that something so small couldn't possibly have any effect appears to be so large.

    It's almost as if they didn't have any appreciation for y'know, cellular biology, of the type used by all multicellular life, on the planet.
    Solstice, Amw66, alktipping and 7 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Ironic. This is the whole idea of the BPS ideology, it's basically the entire claim: it's "holistic", whatever that means. The BPS ideology is very much a dominant force in modern medicine, it has effectively creeped everywhere, it is, for all intents and purposes, the medical paradigm of the entire healthcare system in the UK.

    And yet it is a complete sham, a simple fact anyone can easily recognize. So much that it is, in fact, voiced out loud. As if obsessing over a few biased questionnaires and reducing people's lives to a few BS meaningless numbers or fully generic nonsense could ever amount to a more comprehensive approach to health. Literally the worst con in the history of medicine, a history filled to the brim with cons, quackery and charlatans. Some traditions die hard.
    bobbler, Amw66, Sean and 4 others like this.
  5. BrightCandle

    BrightCandle Senior Member (Voting Rights)

    The situation with the healthcare system dismissal of complex diseases has gotten to the point they know they can't fix it, its so bad now they have had to open up a parallel healthcare system to cover the giant chasms of the first.
    Haveyoutriedyoga, Amw66, Sean and 4 others like this.

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