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NHS not taking my condition seriously


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I am from the UK and unlike in the land of privatised healthcare our health service is free at the point of use. But I sometimes don't see that as a good thing, let me explain why. Although I love the NHS for being there for anyone poor or rich I feel like in the USA as you are paying they see you as a customer and treat you with respect. It took me 2 years to get my diagnosis of POTS secondary to HEDS.  I started with symptoms and at the time I was already under psychiatric care, the doctor of course blamed my symptoms on anxiety without a second thought. I took 4 or 5 antipsycotics and anti anxiety's for my "Anxiety" and none of them worked, they just made me feel more ill. I then started to google my own symptoms and at first got MS. I went to my doctor and said I might have ms he of course almost laughed at me and sent me back to my psyc. Low and behold after 2 years of suffering at the hands of the NHS I found out about POTS and demanded to see a cardiologist. I was refereed to a POTS specialist in my area and walked away 99% sure I was right all along. After a tilt table test and some others I now have my diagnosis. You think the story of being a joke to medical "Professionals" would end there wouldn't you? Well you would be wrong. I was told by my pots nurse that most doctors and nurses don't know about pots and don't really take it seriously. Well only 2 days after my diagnosis I came down really ill.

 

My resting heart rate was 120 and standing caused instantaneous feelings of vertigo and pre syncope. I live on my own near no family or friends and thought hmmm if this goes on for long I might die of bloody thirst. I couldn't get up to go to the toilet, or get a drink of water. I called 111 (The non emergency health line) and explained my situation. They called an ambulance who took me to hospital. My temp was 38.6 my head was spinning and my heart rate 120 laid down. After an hour I heard someone ask about the man in cubicle `10, that was me. I heard the head nurse say "He needs a paracetamol and sending home" I was pretty annoyed at this remark as I have dealt with this condition for 2 years with no help. And now in my time of need the NHS ignore my newly diagnosed condition and think I would go to hospital for something as little as a cold. They then discharged me still unable to even stay stood. I explained to them while still on the bed that I could not walk due to my condition and being ill. They looked at me like an attention seeker and said I have no choice.

 

At this point I accepted that even after proving doctors wrong who had doubted me for 2 years I still wouldn't be taken seriously as I have a "Fringe" condition. It is one of those conditions that is just serious enough but not serious enough at the same time. Its somewhere in that sweet middle where you are ill enough to be disabled but not ill enough for anyone to give a ****. I asked the nurses how I would get home. I had no money as I left my card at home (Didn't really think of bringing my wallet as I was being taken onto a stretcher into an ambulance) They said they can write me a slip so I can get the bus. At this point I was just angry, The bus? The bloody bus? The bus stop was 500 meters from the hospital and I have a condition that doesn't allow me to walk far on the best of days and here I am at my absolute worst. Lets also never mind the fact that I am a severe agoraphobic prone to panic attacks in public spaces. Couple a panic attack with POTS and I was sure to pass out. I said the nurse this is a joke...  I will be back in 10 minutes when I smash my head on the floor from passing out. She said there is nothing that can be done. Luckily my dad wasn't working and he drove 15 miles to and from to take me home.

 

I am sorry for the novel but I guess to summarise this post does anyone in the uk specifically feel like their condition is not taken seriously? But does anyone elsewhere also feel this way? I am by no means a needy person. I am 22 years old, live alone and have pretty much just dealt with this condition as it comes for the last 2 years all on my own. But now with a diagnosis I just want some help. I'm not looking for sympathy but when I am so ill I can not stand is it too much to think the nhs would keep me in for a few days and look after me till I am well? I just feel like the NHS has 100% left me to rot.  Thanks to anyone who reads all of this and I am eager to know if anyone else experiences the same?

 

 

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Hello and welcome to the forum.

So sorry you have not gotten the help you need and you are feeling so very unwell.  Unfortunately many of us have experienced this to some extent, including in the US.

This list includes some physicians who practice in the UK.

https://www.dinet.org/physicians/

There are other members using this forum from the UK and they may have ideas specific to your situation that may help with navigating the system there.

 

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Oh i totally get you nhs thinks it all in my head !even with peice paper to say it not and a dignous of pots me/cfs posisble mast cell disorder . ... i see dr julier newton  she good but she not give me any drugs or out as i dont seem to agree to them lots water and salt ane is form torture  they just look at u like u a hypo over stressed mum of two . Even when u cant breath proper . It like hey yerh you house bound bloody cant go no were but u ovs faking for attention ppl ....

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Hi Sorry to hear about your plight. I had problems after Glandular Fever in 1984 and ten years ago it all got worse. I finally got diagnosed with EDS at the age of 53 and POTS at the age of 55. You're not alone as many people have a hard time getting a diagnosis and taken seriously. It is easy for doctors to say it is anxiety (psychological) when they don't have the answer. Ten years ago I was told it was the way I was thinking that had caused the whole body neuropathic pain and autonomic dysfunction. Of course I know that they were so WRONG! 

I educate everyone I speak to in the hospital and that will never stop. Many doctors have never heard about EDS and POTS and that is down to them not covering them at medical school. Don't give up. 

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Hi Wilsonbed, we know how you feel lovely. I live in the UK and was recently discharged from hospital. I overhead nurses saying that they too suffered anxiety when I was in the middle of an attack. When my heart rate was fine they just fobbed me off even though I could hardly breathe. My first referral was to mental health whilst in hospital. I was asked about my childhood etc! I made it my mission to educate every single person I came into contact with whilst there. Nurses were great and curious about it but one consultant I saw was horrendous. 

I asked to see a neurologist and this was agreed whilst in hospital. Then I was told no neuro is coming and was discharged. So the next day the bad attack came again and my mum drove me to the next city hospital where they have a neurology team. Slightly better treatment there. I stayed on a few nights. 

I'm so knocked by how bad these symptoms can be and how you are treated in the NHS with it. I am printing off useful info on the conditions and in the process of writing to my local hospital. 

Just try and educate as much as you can. Print info off highlighting all the symptoms this can produce and have it ready in a folder. Also any neurologist letters. Take these with you of you end up I think hospital again. If your neuro is rubbish, get some money together and pay to see one who will confirm all you are dealing with. I am absolutely broke but if I hadn't paid a bit unfortunately I wouldn't know what I know now. It's not right I know. Can you also write to your hospital and send them the info about dysautonomia? Worth a shot. 

I am myself coming to terms with how terrifying this is and the fact people look at you like you are insane or faking. If you have any related psychological struggles they always put it down to that. So wrong. Anyway, my point is you are not alone 

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  • 5 weeks later...

Wilson, I'm in the UK too and it has been a complete nightmare. The worst experience I had was at a non local hospital with a non english speaking doctor who attempted to write a letter that was so factually incorrect it was laughable. She was truely poison and the only way I would go anywhere near that terrible grotty place again is if I was dragged there. 

I was lucky that I saw a local neuro and cardiologist pretty quickly after symptoms started and they were smart enough to twig I had some degree of autonomic dysfunction mainly due to my pupils being different sizes when I felt bad, mad heart rate jumps and BP variation. Admittedly I did have to pay to do this as my GP was fixated on anxiety and my refusal to take SSRIs really enraged them. They still arent fully on board with what the consultants say but I'm not really bothered as I give their opinion absolutely no weight at all, they are more focused on the 10 minute target and getting you out the door than anything else.

I think the odds are stacked even more against men with the condition as it has been seen as something women get.

Not sure geographically where in the UK you are but I know there are some good medics out there its just finding them. I'm in the south central area.

The NHS is pretty worthless for this kind of condition, great if you need a heart bypass or broken bones fixed, but useless at stuff like this.

ME/CFS is something I wouldnt want anywhere near my notes as from what I can make out the majority of people in the NHS class that as a psych disorder and a dustbin diagnosis that means they then no longer have to try and improve your quality of life.

As you can probably tell I am extremely angry and bitter about my experience and if I hadn't of paid to see the local cardio and neuro as @jojo79 did I would have been left to rot. 

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  • 3 months later...
On 12/20/2017 at 10:00 PM, bombsh3ll said:

Thank you Peter for speaking up not just for yourself but for all of us suffering with poorly understood and difficult to treat conditions, and the way in which we are treated (or rather not treated) by the NHS. How did your meeting with the MP go?

A lovely lady. When I initially wrote to her, it was because the NHS had done nothing about my condition as they had fobbed me off with the usual "its anxiety" excuse, In the meantime I had finally got a cardiologist to actual listen to what I had to say, and he agreed it has to be Autonomic Neuropathy, so I told her, that for me, at least the wheels were now in motion.

But I also used the chance to express my belief that the NHS could save a lot of money if they changed the culture of doctors who think they are demi-gods that know more about how we feel than we know are own bodies, if they would listen to us rather than considering us stupid pieces of meat. I told her that in my research I had discovered the huge waste of young peoples lives who are fobbed off for as long as 15 years before finally getting a diagnosis.

Whilst she admitted that she already had a cause she was involved with, at least she has now heard of this and was Googling it as we chatted.

She wants me to keep her posted regarding my treatment, I will bump into her from time to time, we shall see.

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  • 2 months later...

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