Deregistered from practice
Reopened this as closed on account of 'veering on medical advice', helpfully. In the world of never use your brain and seek out 'experts' to think for you. Never endeavour to learn anything.
Sorry, to say that this specialism and how its practised isn't hard to understand. It's plainly about observing 'known conditions'. These 'experts' blundered awfully as they cannot think beyond following protocol for known conditions. In short, their analytical skills are very weak and they fall back on assumption when presented with anything atypical.
Is this true of all cases? Well, it's true in this case and that is what is important. I don't give much weight to the word 'expert' when the causality of the problem hasn't even been accepted after ten years of the problem starting, and entirely discounting my observations, which are frankly sound and based on careful observation.
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There's one more surgery in the same building as my old practice. I am just not in a hurry to register as I expect to be dismissed in a similar way to the last three practices.
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No, not yet. I have an appointment with the hospital. I don't think I can put myself through it with another practice if they're not going to acknowledge being in error. I have emailed the ICB and will see how they respond.
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No. Still waiting for a response back from them. I rang a few times but wasn't able to get through.
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Anyone there to speak to? I am very depressed after taking great lengths to complain several times at different hospitals based on the treatment I had and with them simply doubling down it's clear to me that they don't care about evidence or what is really true. I give up
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What the point in PALs or the ombudsman or NHS England. They don't properly analyse evidence. They've made terrible assumptions and this is why all of this happened. They've placed the onus on me to diagnose my own health condition.
I didn't know this could happen. I feel like a fool for ever having confidence in them.
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I believe bleach (very diluted- you would need medical advice in how diluted) can be used in the bath for some conditions-such as infected eczema- have you tried this yet?
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@Slonvinton Hi, thanks for this. I did actually try this with flash with bleach and diluted this but it resisted this (it's really resistant stuff). Currently it's feeling like it's pointless even seeing a GP as they have all largely ignored me on top of the specialists. I have been trying to contact microbiologists privately to engage with my case.
Yes, obviously trying things that will work and are safe to use on the skin.
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Mostly I've just been patronised. These people think that this is what I deserve for the last ten years. And had they removed this I could simply focus on another mystery pain disorder.
I strongly feel that the doctors who might show curiosity and are willing to challenge assumption by looking further would certainly find something. I would bet my life on it. I have even challenged them that there would be a way ho clearly observe this with an electron microscope. PCR or whatever they can reasonably afford, but if they are saying 'I have 'fixed beliefs' there is just a terrible flaw in their analytical skills.
They had no right to say this.
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I’m not a doctor but regular household bleach doesn’t sound like a good idea for infected skin. Ask your chemist or 111 for advice.
Salt in water is usually good for tackling or preventing infections. But household bleach products may have harmful ingredients and is corrosive. Similar products for medical use might be available over the counter but have a word with your chemist.
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Hi @wobblyone thanks for your input. Yes, I agree with you. It does seem, though that this isn't an infection based on what they told me. The skin was never compromised and the effect of the substance itself is that it is capable of clinging to skin, presumably mammalian skin bit I don't know it's chemistry :(. Unfortunately none of the doctors or dermatologists have engaged with this as it's well camouflaged and only really visible in certain lighting conditions.
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@Ranald it's not recommended. But Flash with bleach is a low concentration. 0.5% sodium hypochlorite which I further diluted at 7 parts water to 1 part. I won't use it again but these people left me desperate.
By the way, it doesn't seem to be an infection. It involves a strange yellow microbial substance but maybe the one part they are right about is it's not an infection. It seems to be about the substance/biofilm(whatever it is?) and how it's capable of adhering to the skin's biome. I asked a microbiologist about this and she said that it was unusual as the skin is a hazardous environment for microbes, but it's pretty clear that it involves microbes.
Its a yellow camouflaged substance, though and you can only really see it in specific lighting conditions. I think because of it's atypical nature it's been dismissed. But I am not sure what steps to take as I would be on my forth GP practice along with 8 dermatologists I have seen (2 privately and the ret on the NHS).
So, yes, the goal is medical advice but it's not clear what area this falls into in medicine as all the dermatologists just dismiss me based on their observations.
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Hi@Ranald. Sorry that last message was meant for @wobblyone. The bit about the infection.
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I realise it sounds a bit mad, but its a commonly done treatment for infected eczema.
https://nationaleczema.org/wp-content/uploads/2024/09/NEA_Factsheets_BleachBath_D01.pdf0 -
@slonvinton yeah, what is the dilution, though? 0.02% sodium hypochlorite. I need to find something that is safe for the skin but bad for this substance or affects it's chemistry. :(
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Hi all. Just wanted to highlight the house rules regarding medical advice, and that nothing should be done without speaking to a medical professional first.
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@Holly_Scope very sensible. Need input from medical professional but which area of medicine? Can we discuss which area of medicine might help? The GPs and dermatologists have not helped :(
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I have just been trying to get help for ten years. I have seen 8 GPs and 8 dermatologists. They treated me very poorly and I don't believe they have a good excuse for this. I understand how science works and they haven't applied it here.
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If anyone knows anything I could put to the GPs to advise them on which area of medicine would help, this would be good. Recently the best thing I have found is a lush rehab shampoo that appears to have done effect on the biofilm/whatever it is. So that I can remove some with my nails. This is the best thing I have found.
I really think it's terrible that in all this time they've pretty much dismissed my entire account of how this happened. And they should be interested in novel cases and their training should factor this in. Just wasting people's brains and input by ignoring the information I provided.
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That sounds promising @harry01, glad you've found something that seems to help but I'm sorry you're feeling dismissed. I'm not too sure what other avenues you could try I'm afraid, but I hope you find a solution soon.
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Well, they haven't engaged. I am gobsmacked as they're not updating their knowledge. I am presenting something that they can learn from.
I will look further into this shampoo and any products that are for the skin/hair that I can safely use that might have done effect. Whether it's a biofilm or whatever you call it, it amounts to a resistant biological substance that clings to the skin. I could ask them again at the universities.
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