Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Denied treatment in the UK need to leave my country again.

Discussion in 'General ME/CFS Discussion' started by Shawn, Jan 5, 2017.

  1. Shawn

    Shawn Senior Member

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    Well actually the title is not exaggerated it's effectively the reality...Before reading this remember no matter how much abuse you take ,your illness is real and it's NOT your fault and you DO deserve the same treatment and respect as suffers of other illnesses.
    The U.K. Seems to be unique in the fact that it neglects and disdains people's with rare Neuro immune illnesses.

    You might remember before I wrote a thread talking about how my ME like
    Syndrome started and how i found the underlying cause of it, if you want to see that one search "NMDA antibodies CFS cause" on PR I'm sure it will come up.

    Medically been treated well in Asia and Esp in Taiwan,I had full plasmapheresis and a very small infusion of Rituximab finally I had some relief ,a VERY noticeable relief albeit temporary.Symptoms started to return after 2 months but no point to worry because now I had a diagnosis with testable verified auto antibodies in my serum and CSF in the UK so I would be taken care of right ? Yeah great ,so I bought a 400 pound ticket and went back to London sleeping in pain on 3 seats aboard a Virgin Dreamliner for a long 12 hour flight.
    Sadly I was to discover that the UK makes communist countries in Asia look like a heaven of trust and empathy In comparison for people with Neuro immune disease such as ME,in short I was,doubted ,delayed mocked and wait for it ....punched,yes that's not a typo i did say erm..."punched" so here's how it happened.

    After arriving at Heathrow and feeling crap with vertigo and terrible lethargy I was taken to Charing Cross hospital,Intially all was fine but despite showing them a wealth of documentation with CSF and serum samples from Asia showing anti NMDA and anti CA positivity and above all documented response to previous immune therapy and even though the guidelines say patients that are suspected of having an Autoimmune encephalopathy and no other causes can be found should be treated on suspicion before antibody results come back ,well even though I had all the "verifiable" evidence and past treatment history ect I was still asked to wait ,a week later I suffered another acute immune attack and huge fatigue + blurred vision swept in I went back again got re admitted ,this time they promised to Quote "treat it aggressively" if antibodies from Oxford come back positive and that it would be a "3 week wait".

    I was also reminded 2 times via email by my doctor there to "not leave London" as they had arranged PLEX for me and a special nurse from Oxford is coming over specially to administer it to me.Frustrated by the delay (which happened only because they didn't trust my illness was real) and regardless of worry about further deterioration I said ok fine.So after spending 500 pound on those "life in London" expenses "not wise" when you can't work esp when that money can go 5 times further in Asia
    finally my plasmapheresis day arrives on January 3,yay! ,sadly my case Doctor Dr Barry Seemungal who had never spent more than 10 minutes with me since first admission and never bothered to hear my account of my disease process and seemed to think I was "depressed" even though the pysch said I wasn't ,abruptly canceled my treatment 2 HOURS before it was due and ordered me to be discharged within a few hours.I was very upset about this and protested in a non abusive polite yet emotional and slightly loud fashion.

    I was told I had to be out of the ward by 4pm ,security came as I was taking too long with things ,..naturally since I was dizzy and fatigued I told the guards to back off and I won't leave until I get all my bags ready ,at this moment the Caucasian security guard took my bag (which contained expensive Nikon lenses) and threw it down hard outside the door,and physically dragged me out of the ward,and with me still in my ward trousers pushed me up against the wall hard 2 times and punched me in the back which caused me to jerk forward and hit my forehead on the wall,(all was caught on CCTV) I was shaking and having palpitations at that time due to the stress and shock of it all which aggravated my underlying illness,I was verbally abused by the guard and told I'm an A^*%hole ,and that I should "stop pretending to be ill" I found this VERY insulting and I have never ever been treated this way by any doctor or guard in Asia and I have never ever pretented to be sick,nor has anyone else here on PR no doubt.I have evidence of my illness and besides what's the motivation to do that?....for me zero.

    They made an appointment a month later for me with a specialist(who is actually a friend of the Doctor that treated me bad and most likely will side with him later anyway) (now it's a total 2 months wait) as I don't have time to waste to further deteriorate i reminded them what the international AE guidelines state that these flares should be treated urgently or long term CNS damage or dysfunction can occur,it made no difference sadly.

    If they had refused treatment at first it would have been bad ,but to ask me to wait 3 weeks with false promises of aggressive treatment only to cancel it "2 hours" before it was meant to happen is utterly unprofessional and frankly disgraceful esp when the cancellation was based on mistrust of my symptoms,in essence it's indirectly calling me a liar,although they use code language to express that.

    The Case Doctor who had spent a total of only 10 minutes with me since I was admitted overuled the plan of the other Doctors who wanted me to have PLEX and possibly RTX after it, Dr Seemungul despite his own phych Doctor saying I DO NOT have any sort of mood disorder or phych issues and despite positive Oxford NMDA serology and recent verifiable CSF serology and symptoms that simply CANT be imagined he still doesn't take my disease seriously ,now i have to get my solicitor involved and leave the country and return to Asia where they A: believe me B:care enough to listen C:don't call me a liar D:think outside the box and E;actually treat and help me. It's NOT my fault i am ill,and it's NOT my fault that my B cells turned against me.

    People with ME /CFS and similar Neuro immune syndromes no matter their subset of ME are treated like malingering scoundrels in the UK ,and if you accept CBT you are in effect admitting it is actually "all in your head" and promoting this system,don't insult yourself ,you deserve better ,don't make the deaths and abuse of people such as Lynn Gilderdale and many other ME sufferers be in vain,be savvy and use your computers and social media ,buy cheap Facebook ads,target them to a audience and location and share your stories of abuse and mis treatment ,share your suffering ,videos of verbal or physical wrong doing or recordings of insulting conversations with doctors ect,show the world what you suffer and go through.

    You are on PR you have the energy ,use the tools wisely ,20 pound can buy up to 50k targeted views in a location of your choice on Facebook,that's 50k more people know the reality ,imagine if everyone here did that ,how many members on PR X 50k views ! That alone could raise a massive amount of REAL awareness about ME as well as the truth of how people with ME and similar Neuro immune diseases are treated and how they suffer aswell as raising traffic for Phoenix Rising.

    I have suffered horrendous neglect since I got sick ,if I had not fought hard frankly speaking I would most likely be dead by now ,I have slept on the floor on a plane for 12 hours as I was too sick to sit up right for more than 2 hours without blacking out ,I have been called a liar ,depressed ,a hypochondriac all of it ,tears have fell ,relationships lost,savings gone ,career frozen ,the happiness of life gone to be replaced by a new form of "existence".

    No matter what way this situation is looked at the fact is ,I was left without treatment for a further 2 months because the NHS doctors at CC did not believe I had the illness that I was previously diagnosed with despite having serum and CSF evidence and above all despite responses to past immune treatment.Without evidence for anything else they effectively accused me of malingering,and being depressed or having "Functional" symptoms which is code for pyschogenic,without any evidence from even their own side of course you would think a doctor would have listened to my account of how this all started and the background....? if they did they would likely understand this was clearly abrupt and virally instigated and highly suspicious of being immune mediated even "before" evidence supported it.

    For anyone interested I have attached my discharge summary to this thread.
    Note at the beginning how it says "non organic" ataxia ,non organic is Latin for "its all in your head" so excuse me if I don't feel insulted that as a respected successful individual with a good life in Asia I am suddenly treated with disdain after being subjected to immense suffering and financial loss.

    Shawn
    Facebook: http://tinyurl.com/gu8fqy7
     

    Attached Files:

    Last edited: Jan 12, 2017
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I've heard some very disturbing stories of ME patients in health care systems, but your experience is one of the most disturbing - especially in the face of objective tests, so you would seem to have a strong legal case.
     
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  3. Shawn

    Shawn Senior Member

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    I'm meeting my solicitor In person tomorrow,frankly the stress makes me more sick and having to deal with lawyers takes energy also.
    It's unbelievable that I have to take expense to leave my home country and pay for treatment that I deserve here.
    They are financially ruining me which was the little I had left after losing nearly all else to this disease.I literally feel I could collapse here and not be helped,this is 2016 and in the UK ,a breach of my human rights,as the A&E won't treat me now even if something happened.

     
    Last edited: Jan 8, 2017
  4. Kenny Banya

    Kenny Banya Senior Member

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    Disgusting! Its sad that in a 2005 study on psychopathy by field, surgeons came fifth! (CEO's first - no surprise there)
    I wonder how far up the psychopathy ladder do medical practitioners sit. Need to check...
    The international comparison reminds me of Michael Moore's 'Sicko' documentary - Americans treated reprehensibly & neglected by their own government & when they visited the big bad wolf of Cuba, they received immediate treatment for a few dollars.
     
  5. Kenny Banya

    Kenny Banya Senior Member

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    Your story is why I have no problem with people 'taking the law into their own hands'.
     
    erin likes this.
  6. realturbo

    realturbo Senior Member

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    @Shawn, couldn't agree with you more - one's health is the foundation for everything else. Really sorry to hear of the terrible experience you have had. I am hoping this is an isolated occurence, most likely I'm being naive. Hope things start getting better for you soon.
     
    Mel9 likes this.
  7. Shawn

    Shawn Senior Member

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    For anyone interested I have attached my discharge summary to this thread.
     
  8. Mel9

    Mel9 Senior Member

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    Can you report your assault to the police?
     
  9. Shawn

    Shawn Senior Member

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    I did,they are looking at the video footage,I think the lead Doctor took a dislike to me because I know a lot
    About my illness and it's mechanisms ,in Asia the doctors respect that and think it makes you a better team player with them,here they don't like that at all they talk at you not with you.
    That's no excuse to treat me that way my mother is 71 years old and a recovering cancer patient she is getting more frail lately because of this stress ,they have cost her over 10000 pound in order to help support my private treatment abroad and expenses for her to fly and stay with me ect during such times.
     
    Last edited: Jan 6, 2017
  10. Thinktank

    Thinktank Senior Member

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    Sorry to hear what you've been going through.
    Your story is the reason why i don't bother with doctors and hospitals in my home country any longer, except my top notch ME-doc in Belgium. I have been abused, denied and called a hypochondriac in my worst state of health.

    I now do my doctor and hospital visits in Thailand (where i'm currently residing), They are much more compasionate and understanding. For example, if i want a MRI done i can go there and have it within 2 days. Advanced laboratory testing is usually shipped to the mayo clinic lab in the USA.
    They have never refused me any investigation that i requested. So in that sense, its pretty much like China.

    They actually listen to what i have to say, they look at the research i have done and read the studies mentioned. In my home country i get to hear, oh you have this from the internet? You shouldn't read that, it's wrong. stop googling, you don't understand pubmed. You suffer from health anxiety, go to a psychiatrist.

    Private healthcare in Asia +1
     
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Perhaps ask your attorney their opinion of the cost / benefit of going to the media. It may exert extra pressure on the hospital. But what toll will it take on you?
     
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  12. alex3619

    alex3619 Senior Member

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    Beating on sick people when you know they are sick is a hate crime. The media and police may both be interested. Its a shame you were not in a state to report it immediately.
     
  13. Molly98

    Molly98 Senior Member

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    So sorry to hear the abuse and mistreatment you have been subjected to @Shawn it's appalling and must be extremely distressing and stressful for you. It is shocking, but it does not surprise me one little bit. The situation in the UK with ME and similar illnesses is horrendous. If you have ever been labelled as having ME CFS then it is like a label being put on your forehead to make you a target of abuse and disrespect, which gives other people the right to treat you as an untouchable, to abuse you, Judge you, dismiss and disregard you.

    In a split second you go from an intelligent, competent, well regarded and respected professional individual to someone who is treated as if they have lost all intellectual ability, all judgement and reason and integrity and nothing you say can be believed or trusted. It is incredibly distressing and harmful.

    Knowledge is power, and it seems this doctor did not like the fact that you were knowledgeable about your condition because he likes to be the one with power and in charge and does not like his power being challenged. You must stay the helpless, ignorant patient hanging on to every word he says, doing all he asks without question so he feels good about himself.

    It is less about medicine and all about ego and challenges to ego.
    I do think this is one reason why you are experiencing such better treatment in Asia, it is not a positive quality in East Asia to have an out of control untamed ego and I don't think the culture breeds this in the same way as it does here.

    I can't tell you how many medical professions I have met or heard of who are prime candidates for needing in-depth psychotherapy and they tell us we need CBT :rofl::rofl::rofl: what a joke!

    I really hope seeing a solicitor is useful to you, I would love to see them held accountable for their actions, but this route is exhausting so please do take care of yourself and your health.
     
  14. Shawn

    Shawn Senior Member

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    You have hit the nails on the head with everything you have said in your comment.For me the most distressing part is not being abused and sent away but it's the fact I have to be effectively exiled from my own country and can't come back because if I do I won't get disability or anything,in Taiwan i can rent a place for 200 pound a month and eat for 2 months merely with 100 pound ,I can teach photography online and make enough to live,in the uk the cost is too high and obviously for what I am able to do the ability earn would not match those costs.
    I have been through a lot of tough situations in life,heck I used to be in the military for a year but nothing has let me drop a tear like this illness and the abuse that comes with it,the true communists and lack of human rights are not in Asia in fact they are right here on our doorstop ,the whole system when it doesn't agree with you turns against you ,other hospitals would not take me seriously now because of what's on the computer system from Charing Cross hospital.

    I could never get the images of Lynn Gildergale who took her life due to ME and despite having multiple organ damage and being unable to move doctors told her "to think you will get better and you will and stop being lazy" ,she was in effect murdered.

    Notice how they stated in my discharge report how I was "knowledgable" about my condition,it would appear at first to be a compliment but it's an underlying negative message meant for the sarcastic eyes of other physicians here.

    You know what ,I would rather have AIDS I really would ,and when a person has to say that it's a sad sad day and one can then imagine how bad it is.

    It is human nature to survive my instincts drive this ,I have a frail old mother that needs me and I can't abandon here to the decrepit claws of social services.

    I was a respected photographer in Asia who was given an award for his work I had a following my life had meaning ,now I am being treated like a scoundrel dog at best ,the contrast is shocking.Its hard to take actions to amend this situation because my fatigue is so profound and over doing things and stress just makes me more sick so I do need to tred carefully even with any actions i take.


     
    Last edited: Jan 6, 2017
  15. Shawn

    Shawn Senior Member

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    Yes despite the fact that the resources I and assume you read are all credible NCBI articles in medical literature and the theories I get are coming from leading specialists I am in contact with back in Asia ,and with autoimmune diseases only theories do exists as to why,but it's fact that a usuall benign HSV 2 infection triggered mine ,that my body did not make antibodies against it and this is highly abnormal so the theory my Neuro back in the east gave me which is supported by theories in the literature is that the B cells failed to encounter the virus as it was not in the bloodstream went into overdrive and started targeting other neuronal targets instead.Thus the idea of administering HSV 2 glycoprotein in order to properly stimulate correct antibody production is a solid theory that really makes sense for my case.Ironically if I had got some viremia during my initial infection this disease would most likely not have been triggered.

     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Shawn,
    I can understand your anger but I thin it may be sensible to consider the other side of the argument before wasting money on legal fees. Legal redress for assault does seem appropriate but there is no point challenging your medical care.

    Remember that the NHS is simply a compulsory universal insurance system. Everyone pays in on the assumption that money will be used to pay for treatments of demonstrated benefit. If money could be used on a free for all try this or that on a whim approach the system would obviously collapse. The British people have opted for this sort of insurance. If people want something else they have to pay for it, just as in China.

    It looks from the discharge sheet that it is accepted that you may have an illness due to NMDA antibodies. If that is the case then within the NHS the right thing would be for you to be treated by an expert in the field and you have been referred to such an expert of Queen Square. So I think it is hard to suggest that you have been denied treatment - you are being offered what is likely to be the one of the best opinions in the world.

    I agree that a month delay in the appointment is unacceptable, but that reflects the British public's decision to pay less into the NHS than it needs. It is not the fault of people in the NHS I can assure you - they all want to be able to see people quicker. I agree it may be the fault of politicians who refuse to put up taxes despite the people wanting more money to go to the NHS but that is still not the fault of the people actually providing the service.

    I think it is worth considering the options in detail. You have been offered some prednisolone, which seems reasonable as a stop gap. I would certainly not recommend using cyclophosphamide as it is carcinogenic. If you have an NMDA antibody associated illness the chief aim is to deal with it long term. Immediate therapy might be relevant if there was evidence of ongoing tissue damage, but from what I can see that is not the issue. The issue is your symptoms. Plasmapheresis is a quick way to deal with ongoing damage but is totally impractical as long term management so it would seem to me not to be a sensible thing to persist with. Moreover, it seems that you are still very unwell, suggesting that the plasma exchange you have had has indeed had no lasting benefit.

    Rituximab might be a logical approach to a long term solution in this situation. However, it sounds as if you have had rituximab within the last three months and have got worse recently rather than better. To work out what that might mean one would need to look at B cell numbers and have familiarity with rituximab usage. Very few physicians understand this so referring to Queen Square seems very much the right decision.

    So in short I agree that a month wait is unacceptable but I doubt it will make a lot of difference to the long term possibilities and it is long term management over a period of years by a world expert that you need, not tinkering by someone ready to sell you this and that. The Oxford lab is the best in the world, as is the clinical expertise that goes with it, which overlaps with Queen Square. If there is good reason to think that you would benefit from long term management with something like rituximab you would get it from this service - and for free. It would be cheaper than plasma exchange anyway.
     
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  17. Sandman00747

    Sandman00747 Senior Member

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    Shawn I am so sorry to hear about your treatment, or lack of, that it makes my blood boil! It's so upsetting to me as growing up as an average boy in the Midwestern USA I always thought through experience and education that the UK was one of the most " civilized " societies in the world.

    But from all of the stories I have heard from people's ME experiences, I now think of them as almost barbaric in their treatment of ME patients. What is it with the UK and CBT and GET and antidepressants and the like? Do these docs have some incentive to force these "therapies" ( and I use the term loosely ) on ME patients and away from medical investigation and treatment? It appears so. Does the NHS "blacklist" docs who go against this mentality?

    Do they really think all the thousands and thousands of patients coming to them with ME symptoms are all nutters or what? In the US I have noticed over the last 25 years for the most part the docs here at least know there is some mysterious disease process going on, as it's become such a "silent epidemic" that many docs themselves or someone in their family or some friends have been affected by this disease. You would think the UK would have evolved to this point by now. Something is terribly wrong here!

    I am more fortunate than most as I've spent my life working in cancer research and have many close physician friends who have known me for many years. They know me and have never doubted that something was/is terribly wrong with me. And although they of course don't have the answer to what it is yet, they all have tried their best to at least ease my suffering through any available and reasonable treatment. For this I feel so fortunate!

    Best of luck to you to get that treatment to ease your suffering and improve your quality of life. Don't we all deserve a chance to be treated with the best tools available? I think so.
     
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  18. Shawn

    Shawn Senior Member

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    Thanks for your remarks ,the delay would be in fact roughly 2 months as I had to wait 3 weeks Intially.
    I didn't state in the post that my Rituximab dose was far smaller than the recommended amount as i started to get an IVIG like reaction or hints of one so we stopped ,it was most likely the 250mg infusion of Cyclo that I had after PEX that kept me in near relief for 3 months,but I agree with your view on plasmapheresis it has never lasted me more than one month of benefit,my unhappiness with the hospital was not about the referral obviously as Doctor Zan-di is amazing in this field ,it was the fact I was arranged PEX told to stay here for it mostly at my own cost only to have it denied 2 hours in advance by one doubting consultant that overruled another and must have known about this PEX plan all along, and wondered whether my syndrome is caused by anxiety or depression when his own psych said clearly NO. When your collapsing outside due to "increasing"vertigo attacks (witnessed) and having muscles spasms in your chest that make it hard to breathe and hugely increasing double vision (scary for a photographer)it's natural that the quick fix already pre arranged should have been kept at least to stabilize me enough to wait for such appointments as I have stated clearly before "steroids" do not help and the guidelines do state urgency for disease flare ups related to auto immune encephalopathy(s).

    Also a point to highlight is it is because of the NHS that I became so disabled by this in the first place as when I came back suffering a 12 hour flight after having being put on oxygen on the plane the doctors in Edinburgh didn't even bother to investigate or do any tests despite the fact that I told them my symptoms of acute onset confusion ,delirium and muscle stiffness,they said I was stressed and it's post viral without evidence to back it up,I went back to Shanghai and subsequently had another bout of respitory failure,which after PEX and a steroid pulse slowly resolved ,that was a LIFE THREATENING event and happened only because of investigational refusal and frank negligence and thus delay of treatment,so to waste a month and now 2 months of my time during a flare doubting my verifiable history and results and their own serum result on some "theory" that I am somehow anxious or depressed is not acceptable,I have to leave the country as once again this can develop into breathing troubles and autonomic instability If the flare is left uncontrolled,I don't have a choice basically.Heck I wansnt even offered a steroid pulse to calm things down a bit.
    Naturally i feel the NHS owes me this time around since it was their ignorance that brought things to this stage in the first place and cost me untold amount of financial loss and suffering.I would agree that long term management is the best but a quick fix to keep me safe for 2 months which "was arranged" in advance should have been kept canceling it at the last minute and man handling me out a few hours later is frankly making a fool of somebody.

    I had immunologic testing in asia and what it showed was huge activation of all T cell subsets CD8,3,4 NK, they told me this was a non pathogenic protective response , an ongoing attempt to control and eliminate relentless influx of auto antibodies and Auto AB secreting plasma cells,so that explained my reaction to IVIG as it was targeted similar as other autoantibodies which caused me an acute inflammatory reaction within the CNS further dropping my baseline ,my case is complicated because of this ongoing immune reaction against another part of my own immune system,this reaction while in essence being protective also causes suffering and damage.

    In regards to demonstrated benefit,my past response to PEX and Cyclo surely is clear enough.
     
    Last edited: Jan 8, 2017
  19. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Choose HIV.

    As someone living with both HIV and ME, you are absolutely correct - if people had to choose between HIV and ME, I can attest without a shadow of doubt, that every one should choose HIV.

    Its a no-brainer.
     
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  20. erin

    erin Senior Member

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    @Shawn, I just wrote in a thread that I was lucky that I was given good care by the NHS and after reading your experience I feel quite stupid. I guess NHS has very clear boundaries here in UK.

    M.E. is still unproven as a physical disease according to NHS. You only get symptoms treated which is very annoying. I was given good care for the symptoms.

    However, as I go along life I guess I lost my health, to me valuable time of my life, I gradually stop working, I lost my fertility, I lost friends, family members are not in touch etc, but symptoms were treated to a degree. And this is as much as you can get.

    I don't know what else to say, I feel very sad.

    I hope you continue to fight and get a proper cure, not symptom relief and hold on to your health, you are still young. I feel I lost the fight, it is difficult to fight when you're not well.

    Lastly, I live and tried private health sources abroad, even within their NHS. I was treated with respect and no one ever wanted to kick a patient. I have never came across this yet. However, in UK I have witnessed this. Not excepting the lack of service here in UK is not excepted, and even physical force is justified somehow. If this is not oppression I don't know what is?
     
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