You couldn’t make it up…

Many of us have had those moments. The moments when we’ve been baffled/ bewildered/ outraged by our dealings with healthcare professionals:
e.g. A&E telling you your case is too complicated and to talk to your GP
e.g. your GP telling you to register at another practice because your condition is too complex
e.g. your ‘specialist’ telling you they don’t believe in your condition.

We’d like to collate these, and share them, to help make a difference.
What’s your moment?

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2 Responses to You couldn’t make it up…

  1. Daryl Cupples says:

    Daryl Cupples says
    I first found out that I had a Rare condition after my daughter was in 1997. I then found out that I had Porphyria Variegate and my consultant didn’t say very much then. So I went home and looked it up one Internet and I learned a good bit about the condition. I was in and out of hospital because they first know anything about it and even today which is 19 years and they still don’t know anything about it. Every time that I go to A&E they just send me home which I had attack of the condition. Even the nursing staff where very rude to me and made fun of me. After I had the paper work to say that I had this condition is went home and told my mum because the rest of the family would need to be tested and my mum through up the paper work in my face and started shouting at me and saying you don’t have it. I feltl very alone and very hurt which I sill feel this way today. The my sister had her first child she then went private and then she was told tats he had the condition and then the rest of the family got tested then but if they listened to me in the first place they didn’t have to go diwn that chanel. So my mum is a carrier and also my big sister and I both suffer from the same that we have the full gear and my sister is like my mum but my brother and my wee super don’t have it. I find it very hard to deal with it because I am the one who seems to suffer the most from this condition as I have had one thing after another. This year in 2016 has been the worst so far everything has just shut down. I don’t think that my GP doesn’t really understand it to Much but they are trying there hardness to understand. I would love to have a support group set up in Northern Ireland and Ireland to help the doctors nurses and everybody who would look after the person with this condition as we are in 216 I don’t want to wait another ten or more years as we need to do something now.

  2. Joan McParland says:

    ‘Fatigue clinic specialist’ during a physical examination asked if I had recently been on holiday due to my lovely ‘suntan’
    I explained I had been so severely ill I had been bed bound for 11 months and my GP had diagnosed jaundice the day before! He recommended I take high dose sedatives for a few weeks and (laughingly) commented I would live another 50 years.
    I still have ME16 years later and remain 80% bed bound.
    Little has changed as I remain without specialist NHS care and deal with the frustration through working (from my bed) to educate medical professionals.

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