The Wilful Neglect of Patients on the NHS

I write with regards to my current treatment on the NHS and what I deem to be gross negligence under the care of a Government service that is meant to serve the people who have worked hard all their lives to pay their taxes for.

I suffer from an array of complicated illnesses. I have an initial diagnosis of M.E/CFS, for which I have been treated like all my symptoms are in my head despite the World Health Organisation ICD-10 Classification of a neurological disease and the Department of Health’s recognition of M.E as a neurological disease.  I also suffer with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Endocrine Dysfunction, Immunodeficiency and am under investigation for Primary Sclerosing Cholangitis – all diagnosed by top consultants.

I became unwell in November 2007 when I contracted Shingles and whilst not knowing it at the time became HHV6 positive. Both viruses combined killed my immune system and I became immunodeficient in IgG and IgA, causing me to get serious recurrent infections whenever I left the house, rendering me housebound to the present day. I cannot exist in this world as the second I leave the house I get a serious infection, be it stomach, eyes, skin, ears, laryngitis, inner ear infection, pleurisy, bladder infection and more. As I write I am recovering from Shingles outbreak number 21.  

I also suffer from extreme griping pains in my stomach and experience massive amounts of vomiting, when I first discovered I was immune deficient I thought I was picking up an unusual amount of norovirus bugs due to my condition – I now know to be a bile duct blockage causing gallbladder disease and massive chronic infection.

I also experience severe pains in my joints, dislocations, tears and sprains and muscles that twist and rip on minimal exertion plus extreme fatigue and flu like symptoms no doctor could ever explain to me. The closest explanation I received in 2009 was that I was basically so immune compromised I was allergic to living in the city and it was making me sick. I became so unwell I collapsed, had to leave my job in February 2009.

I had no idea why I was so sick and several months after my collapse the only explanation I was given was that I had M.E.

Subsequently after being diagnosed with M.E I began to suffer with severe seizures, heartbeat irregularities and fainting episodes, which I now know to be common in M.E patients but at the time frightened me immensely. I went to my local NHS M.E service, the Sussex M.E Clinic who took no interest in my symptoms whatsoever and asked me if I had been abused as a child as evidence suggests “traumatic events in childhood” are common in people with M.E. I have no idea where this statistic originated from but I can hazard a guess.

I was offered a telephone consultation by a physiotherapist. Not actual physical therapy, I hasten to add, but a telephone consultation to “discuss my symptoms”. I had the telephone call where I frantically described my blackouts, seizures and other symptoms that I now know to be Orthostatic Intolerance/ Postural Orthostatic Tachycardia Syndrome.

I was told by the physiotherapist that my symptoms were not understood, unheard of even and that I was too complicated a case for the clinic. I received a letter within a matter of weeks stating I was to be discharged. Many other patients who are severely affected are experiencing the same lack of care. The Southern Health NHS trust clinic even states it caters for “chronic fatigue” only, not M.E. So where are the severely affected supposed to go?

I changed GP’s as my symptoms were getting worse.

I registered as a new patient at a new surgery in January 2010 because I was experiencing severe symptoms that were not in my belief connected to my then current diagnosis of M.E (Myalgic Encephalomyelitis) and thought a fresh opinion and outlook on my case would be of benefit to my health.

The first incident of concern I encountered was with a senior doctor.. I had my first check up with him when I registered and he was not too pleasant. He said that he remembered me as a child and “not much has changed then” as I had been very ill as a child. I told him I was going private to London for medical treatment and he said he wanted to see me for a follow up on my return with the results.

I suffered from then-undiagnosed immunodeficiency and my infection rate was every two/three weeks.

At that time there were sickness bugs going around, I had only just recovered from one and I rang the surgery and asked if I could have some medication I forgot to ask for as I was going for consultations two days later. The doctor then telephoned me and told me I could have the pills if I come into the surgery.

I said I could not risk getting another bug as I had to get on a train and I asked if I could have the medication over the phone by prescription and my father would collect them. He said no and that I would have to come in. I explained again about my immune system and he lost his temper and said, I quote word for word “if you are well enough to jet off on a holiday but not be well enough to come down to the surgery there is something seriously wrong with you” then he hung up on me.

 I was flabbergasted a doctor could be so rude to a very sick patient.

Three weeks before registering with that surgery I went to see private consultant in London as I had been experiencing recurrent infections to the degree where I needed antibiotics every few weeks. He did a number of tests including  plasma and red cell elements which in his follow up letter stated that this indicated poor liver function. The tests also showed up low immunogloublins and the private consultant wrote to my doctor asking her to refer me to Southampton Immunology Clinic. I enclose the results and letter.

As I had been receiving no care or treatment from my prior GP, my parents took me to private consultants for initial consultations in in the hope the NHS could unpin the rest, in desperation, to find a reason for my symptoms. What a bitter pill this was to swallow.

I saw a private consultant Endocrinologist on 25th  February 2010 who diagnosed ACTH Insufficiency Syndrome and a problem with my adrenal glands – both of which could be causing my extreme symptoms. He stated there was a distinct possibility that I could have an adrenal and/or pituitary tumour and that this would need to be ruled out by a 24 hour urine adrenaline test and an MRI Scan on the Adrenal Gland.

The tests also showed up abnormal liver function, enzymes sitting at twice normal.  

Prior to these routine tests I had never had any liver trouble but my mother suffers from autoimmune hepatitis and primary sclerosing cholangitis which has limited life expectancy so both my mother and I were concerned.

Whilst taking the urine test I contracted a stomach  bug and the diarrhoea was so severe it rendered the test negative but the private Endocrinologist said it would need repeating as I had been so unwell and I would need urgent follow up for the adrenal and pituitary gland problem, which clearly stated in a letter.

 I was also at this time diagnosed with Orthostatic Intolerance which I was told could attribute to the seizure episodes.

When I returned to the NHS I refused to see that GP doctor again as he had been so rude to me. I therefore made an appointment with a female senior partner at the practise and my mother and I went to discuss the private findings with her.

The new doctor made it clear that she did not want to do any more referrals and said that my referral to the Orthostatic Intolerance consultant “could wait”, despite me having such severe symptoms, she deemed it non important.

I gave her the Endocrinologist’s letter and she said that she grudgingly would refer me to a consultant Endocrinologist at St Bart’s in London.

A week later I had to telephone the doctor over a medication query and she informed me that my referral to the Autonomic Unit at Imperial College had been sent off. I queried this and said “but I thought you wanted to leave Imperial College for six months and that the Endocrinologist was most important because of the private doctors findings”. She said that she must have made a mistake and that it didn’t matter. I started to feel panicky then, what about the tumour?

I then made an appointment to see the doctor again and asked her why she had mixed up the referrals as I needed to see an endocrinologist as a matter of urgency.

I said that the private consultant Endocrinologist said I needed urgent follow up and she said, and I quote, “I see no evidence that is necessary”.

I explained what the Endocrinologist said to me about needing an MRI on the adrenal glands. She replied that the letter did not indicate such urgency and that she could not take his recommendation through word of mouth.

She then went on to say that my symptoms were not endocrine related anyway and that it was likely to be orthostatic intolerance and that Imperial College would deal with the Endocrine referral. She also said that I should take more exercise as the stomach problems I was experiencing were due to IBS.

I said but surely it is not up to the consultant to refer me, it is my GP’s responsibility.

She said, I quote “Imperial College will deal with you, he is a highly specialised and educated man, if he thinks you need to see an Endocrinologist he will deal with it, and he is far more educated than me”.

My reply word for word was, I quote “so am I to take it you are refusing to refer me to an Endocrinologist, despite prior findings”. She said “yes, you need no more referrals”.

She was incredibly rude and got very defensive and said that she wasn’t trying to fight me here and was working in my best interests so don’t make out as if she was not.

I left the consultation in tears.

My condition quickly started to deteriorate and out of concern my parents made an appointment with the previous senior doctor whom my father was still under, to discuss treatment options.

He said straight away that I had “gone running to the female doctor” because I was stomping my feet and not getting what I wanted. He said I was highly manipulative and not to be believed. He said that the immune tests (IgG subclasses) my London consultant did were “airy fairy” and meant nothing and that there was most definitely nothing wrong with my liver.

It was clear that both doctors had been discussing my case and had decided that I was to be treated as a problem patient, a hypochondriac.

My last appointment with both doctors was on 24th June 2010.

I attended the consultation complaining of increasing pain in my joints, sickness,

stomach pains, abnormal bowel movements and a general feeling of malaise and fatigue.

The senior male doctor was unbelievably rude and stated, I quote, that “the two conditions you have been diagnosed with, Ehler Danlos Syndrome (Hypermobility) and M.E/CFS are not ‘real defined’ conditions, merely vague diagnosis based on a set of unexplained symptoms.”

I left the meeting with the impression that this surgery was of the belief that all of my pain and symptoms were down to my present mental health state. I admit to having some problems at home and anxiety which was not making life easy but I was in a healthy state of mind. I had previously asked the doctors for a referral to a counsellor/mental health team but I was again refused.

I had already been diagnosed with Ehlers Danlos Syndrome by Professor Rodney Graham, CBE.

To state that Ehlers Danlos is a state of mind is DANGEROUS and I believe worthy of being struck off the medical register.

Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissuedisorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). The collagen in connective tissue helps tissues to resist deformation (decreases its elasticity). In the skin, muscles, ligaments, blood vessels, and visceral organs collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening.

Professor Graham stated that patients with Ehlers Danlos need close monitoring of the cardiovascular and gastrointestinal system.

I did not see Professor Mathias until March 2011 where he diagnosed me with Orthostatic Tachycardia Syndrome and non-epileptic seizures which he is concerned about and is admitting me to the National Hospital for Neurology in Queen Square.

Fast forward to the present.

I saw a Consultant Immunologist at Southampton Hospital on at Dr Stewart’s insistence in July 2010 and I was again treated like I was a hypochondriac. The blood test results were there in black and white, all low Immunogloublins and a positive Varicella blood result yet I was told there is nothing wrong despite catching infections every two/three weeks. I begged and pleaded to have something to treat my recurrent Shingles but I was told it probably wasn’t Shingles despite a positive swab and blood test in Cape Town.

In 2011 I was hospitalised privately where I was told I had acute cholecystitis and I was so severely ill I could have died. On return to the NHS, my doctor, a new surgery yet again, just shrugged and said we won’t admit you to hospital when I had another major flare up.

Throughout 2011 I continued to have massive attacks of biliary infections, my white count soared to over 15, my liver enzymes were raised, I was incoherent and feverish and in agonising pain. Yet on my last admission to hospital I was laughed at, the doctors came round in a team and laughed at me, asking why I was there and what on earth did I want a liver MRI for when there is nothing wrong with me, despite a private consultant saying I needed an urgent CT or MRI (this was months before when we went private but then consultant said he no longer works on NHS and we couldn’t afford to stay with him) I was subsequently discharged and collapsed on discharge and readmitted, left on a trolley in a corridor for five hours before being taken into a faeces infested room where I left and went home. My new consultant has subsequently diagnosed me with biliary akinesia and possible Spinchter of Oddi syndrome / Primary Sclerosing Cholangitis, just like my mother. Yet a junior doctor looked me in the eye and said there is nothing wrong with your liver or biliary tract, your blood work was fine which was an outright lie, my

White cells were off the chart. I am currently in the middle of a complaint with the hospital about this matter.

It is now January 2012 and I have only just had my Endocrine test results back – TWO YEARS ON FROM MY FIRST PRIVATE ENDOCRINE CONSULTATION which show positive for Cushings Disease and yet again I get the “there is nothing wrong with you” speech.

I want to know why I am being persecuted by the NHS, is it because I have M.E therefore it is deemed impossible to get any other disease? Why, when the blood-work is showing a problem, but not a serious problem, am I refused treatment? Why do I have to fight all the way when I am so seriously sick? I am now having to go back to private medicine and pay for a private MRI on my Pituitary Gland and MORE immune tests to prove I am sick, all because the NHS clinic couldn’t be bothered to treat me or are told not to treat M.E patients with immunogloublins etc. What if the patient has a sub-condition, are we to be left to die? Sophia Mirza who died of M.E in 2005 of renal failure which could have been prevented had she been treated properly. Lynne Gilderdale, whose lung was punctured by a doctor who didn’t believe she was ill.  Am I to be the next statistic?

My old GP insisted my stomach symptoms were down to Irritable Bowel Syndrome and also said “there is nothing wrong with your liver”.

I could be in danger of all these biliary infections killing my liver and putting me in cirrhosis.

Whether or not I have cholangiopathy remains to be seen but the issue is all my doctors did not fulfil their duty of care, their Hippocratic Oath, and not only this, they dismissed multiple serious diseases as psychosomatic all because of one diagnosis of M.E, which in my view is dangerous and should be reviewed as a priority by the Government.

Patients deserve better.





9 Comments (+add yours?)

  1. Alison Orr
    Jan 13, 2012 @ 18:38:41

    This is heartbreaking. I feel so badly for you. Who knows what makes medics behave in this way, it’s soooo appalling. God bless you.


  2. Claire
    Mar 19, 2012 @ 13:51:48

    That was a difficult post to read. The attitudes are just so familiar, although I haven’t been through anything like the extremes that you have.


  3. Alex Young aka alex3619
    Mar 29, 2012 @ 22:16:33

    Hi, I have read this blog before but not commented. Things are bad now for the medical scene in the UK (and elsewhere) but they cannot hold back the light of reason forever, though it seems they are trying. Several promising treatments are on the way though I do not know if they might be effective for EDS. Research and reason will get us the answers in time, I just don’t know how much time. In the meantime you might consider if you are up to writing formal complaints every time you are treated this badly from a position of medical ignorance. I hope things improve for you. You are not alone. Bye, Alex


  4. natural way to get rid of acne
    Dec 27, 2012 @ 21:02:35

    Appreciating the time and effort you put into your site and
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  5. Dean Phillips
    Apr 12, 2013 @ 19:23:06

    Incredible. You’ve done a lot of viable research. I was also a sick kid. The western medical community is terrible and I have spent thousands of dollars on vitamins and minerals that are helping. Molybdenum, Essiac extract, NAC, pantethine, adrenal supplements. etc. Hang in there



  6. Julie
    Dec 20, 2013 @ 15:35:06

    Hi there
    I really feel for you .. I have Chiari & EDS and I am fighting for a diagnosis .. oh and I was told I have Fibro & CFS . I reckon reckons are just postmen and teh specialists arm’t so special 😉 Hope things are improving with you .


  7. Julie
    Dec 20, 2013 @ 15:35:59

    Hi there
    I really feel for you .. I have Chiari & EDS and I am fighting for a diagnosis .. oh and I was told I have Fibro & CFS . I reckon doctors are just postmen and the specialists arn’t so special 😉 Hope things are improving with you .


  8. Joanna
    Jul 04, 2014 @ 10:43:35

    I have been given all of those diagnosis too. Have you ever been tested for Lyme disease? Elisa C6 Western Blit test is rubbish, i.l.a.d.s recommended iGenex Western Blot as the best Lyme Disease test. I have EDS & Chronic Lyme (told it was M.E & F.M…. Lyme caused it).


  9. TCP
    Sep 22, 2014 @ 15:17:44

    I am sad you have struggled for so long. This is not right! If you have ME or ANXIETY written in your medical notes you are stuffed. NICE guidelines for ME state that no one with ME should be medically treated as it encourages the patient.. This plays on the psychological profile. This is totally ridiculous. EDS is also diagnosable as you can SEE the hypermobile joints! I am in the same boat with ME, POTS, EDS, IBS and Erythromelalgia (plus lots of other problems). I have been fighting for 30 years with ME and also 7 years for POTS, EDS and Erythromelalgia, which have become more pronounced. Decent doctors have open minds and help their patients. Unfortunately too many on the NHS have closed minds and lack the knowledge needed to help their patients. They also follow NHS/NICE guidelines to the letter and it’s so easy to say ‘psychosomatic’ when they haven’t got a clue about diagnosis and treatment. I wish you well.


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