What now I ask? - politics and medicine

I am dying in disbelief at the lack of patient care due in part by the awful politics that exists in this countries health system. (NHS and Private alike)

I was admitted to my local hospital with acute jaundice and diagnosed with Autoimmune hepatitis 4 years ago, and recently half heartily diagnosed with LUPUS

I was then referred to a Hepatologist at Addenbrooke’s, who doubted the diagnosis because the tests weren’t done in the Addenbrooke’s lab. - I was sent on my way and told that it was post-viral fatigue I was suffering from.

After seeing psychiatrist, psychologist, other specialist, completing a CBT and generally being told it’s all in my head; my health continued to deteriorate.

After several Liver flare ups, unquestionable evidence from a liver biopsy and blood test, my Hepatologist, confirmed my diagnosis as “Chronic Active Autoimmune with Liver disease”. – Hang on that sounds very much like the diagnosis they dismissed several years ago?? Nevertheless, I’ve got a diagnosis now; help should be on the way. WRONG

Another year or so passes and my Hepatologist is still arguing that my symptoms don’t fit with Autoimmune Hepatitis. Something other that Autoimmune Hepatitis must be causing them!

These symptoms are;

oI can't regulate my body temp (cold & hot)

oConstant mouth Ulcers

oChronic active muscle ache

oJoint arthritis

oSwelling of organs; Liver ?kidney – high pain

oRash over hands and feet

oLoss of appetite.

oNauseous & Vomiting

oChronic Fatigue

oInsomnia

oDizziness

oSweats

oTightness of chest

oHair loss

oOver sensitivity to sunlight

oHeadaches and migraines with vomiting

Addenbrooke’s tested me for Lupus - positive ANA and positive DNA antibodies.

Ok, off to the London Lupus centre then – well guess what they claim?

I do NOT have Lupus – reason behind this stupid decision;

1)I’m a man

2)They did not do the positive ANA DNA tests in their lab. (heard this before??)

3)and.... My rash is in the wrong place; it should be on my face.

Thanks for that; so now I am left with these debilitating symptoms that make my life unbearable, giving me a very painful and poor quality of life.

My GP has stated they have signed over legal responsibility and care of my condition to the Hepatology department at Addenbrooke’s and will NOT deal with my symptoms and are strongly against writing any further referrals.

The Hepatology department at Addenbrooke’s hospital identified positive ANA and positive DNA antibodies tests and raised the question “Is this LUPUS?” and will NOT deal with my symptoms.

My Rheumatologist agreed with the Hepatologist at Addenbrooke’s that it would seem I have "Generalized Autoimmune Lupus with Liver disease being prominent feature” and will NOT deal with my symptoms.

So if my symptoms are not related to Lupus, Liver disease or autoimmune then that leaves me with very little prospect of getting any Answers, Diagnosis, treatment or specialist care for them.

Any expression of disbelief, concern or horror at the comments said to me by GPs, Consultants or Specialists is always met with the same reaction - I don't see what you want me to do about it? HOW ABOUT DO YOUR JOB!!!!!

I have been battling these politics for 4 years now – I GIVE UP

12 Replies

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  • Omg you must be so stressed! You should write to your local health authority love they can't leave you this way! Or go to another hospital, as rare as lupus is in men its not impossible, and all your symptoms sound like lupus to me. I hope you get the treatment you need. PLease don't stop Trying!! Someone on here will point you in The right direction of getting care. I'm new here so I can't but I'm thinking of You and hope your ok xxx

  • It may be worth contacting the Patient Advice and Liaison Service at the hospital (as far as I am aware most hospitals have them. This is the address of Addenbrooks PALS:

    cuh.org.uk/addenbrookes/pat...

    They are there to help patients who are unhappy with their care and treatment and will liaise on your behalf with the hospital. Good luck

  • I am so sorry you are having to deal with this. It must be really hard. I struggled with my diagnosis but nothing like what you're describing. I agree with previous comment that you should raise a complaint via PALS. Not that you'll probably feel like doing but at least you may get somewhere. Take care and good luck x

  • 1 in 10 people who have Lupus are men. I have an uncle with Lupus. He was diagnosed after years of ill health and shortly after they found out my sister had it. I have a Lupus rash that has never touched my face.

    Lupus is hard to diagnose and is different for everyone who has it. I would agree with the above comments, and don't give up. Take care.

  • Have you contacted LupusUK for help? Even if you're not a member? Also, have you tried going privately to the London Lupus Centre at London Bridge and seeing either Prof Hughes or Prof Khamashta? Even if it's only once to get you on the right track?

    Can't understand for the life of me why a rheumy would diagnose you with lupus but then refuse to treat you! But then, like you, the health 'system' in this country, and medics generally worldwide, completely defeat me. But I'm still here, despite the buggers' "best" efforts! Btw, it took me over 15 years to get the right diagnosis - so you're doing pretty damn well after 'only' 4 :-).

    You WILL prevail - nil desperandum.

    A few hysterical hissy fits might help?????

  • Screaming up here in Edinburgh on your behalf!!!

    The one thing that does not seem to have happened which has been the salvation of many is a referal to St Thomas's lupus clinic. Your GP can make this referal on the NHS.

    Of course you have lupus. You only nwed 4 of 12 internationally recognised clinical signs to be diagnosed with it including positive ANA and DSDNA. You have nearly all of them!!!! Please get to your GP and ask to be referred. Best of luck. I have many online male friends with lupus. I evwn know of a FB group for men with lupus if you want details. Find me on FB. Sarah Heney.x

  • It is totally disgusting, i'm appalled by how people get treated and i work in the nhs !!! I would suggest either going to your PALS or contact your local PCT or it might be the care comissioning group as its all in the process of changing but I would say 1st point of call PALS and they can point you in the right direction. Good Luck XX

  • Thanks heaps for your thoughts

    To answer a couple of points.

    I'd rather not comment on LupusUK;  They'd only delete my comments again...  if it wasn't for the great people within this forum I wouldn't have anything to do with LupusUK - I phoned them several times, wrote letters, really begged for some assistance and help.  LupusUK responded by sending me a pack of items they want me to buy.

    The undiagnosis (if I can call it that) is curtsy of The London Lupus Clinic at London Bridge - I paid nearly £2000 for that input!! 

    I tried getting an appointment with Prof Huges but he is fully booked up.

    I will go through PALs when I have finished with my appeal with my work - my insurance has been denied because a doctor who I have never had a consultation with illegally wrote a medical report on me because I was in between Consultants at the time. The insurance company Unum are clinging to this report and won't get it redone by my real Consultant. Crazy

    (To counter my negativity - the company I work for are brilliant, they have done everything they can to help me - Accenture are the best company to work for)

  • Wow, I don't even know what to say!! What disgusting treatment!! I thought I wasn't getting far with my diagnosis in 18 months but you sound like your having a horrendous time :-( all the symptoms you listed I could have written myself. I would certainly take this further and hgher! Just because you are a man does not mean you can't/don't have lupus and you need some kind of meds to help you live your life a bit better!! Good luck hun and wish you all the best. Please let us know how you get on xxx

  • Again, I would ask your GP to refer you to St Thomas Lupus Clinic. This action seems to have been the turning point for many and it is on the NHS. Seems like your only remaining course of action. I really wish you the very best of luck.x

  • Small victory - my complaint at the London Lupus Centre has been heard; got an appology and will, from now on, be seeing The Professor

    What a result!

  • Well done Jarrod, congratulations on the result at the London Lupus Centre and getting to see the Professor. Please don't give up and let us know how you get on, you've proven that you are a fighter, Keep fighting! Best wishes

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