Friday, 13 April 2012

The Road to Hospital - Part 1

Where do I begin?

You might all remember I was admitted to my local hospital just days after we released the Responsible Reform (Spartacus) Report

I'd been unwell for months, hacking and spluttering my way through one chest infection after another, but by the end of last year it was obvious that, in fact, I was "Unwell".

"Unwell" is the point where I realise I'm not just unwell. You probably have to have had a chronic illness for a decade or two to know what I mean, but it's that moment of creeping realisation, that flutter of recognition flashing through your mind like scenes from a film : Compass conference, June = Unwell. Singing my welfare song, July = Unwell.Camping with the boys last August = Unwell. Oldest son's 7th birthday (October) = Horribly Unwell. Working on Spartacus Report = Unwell, Unwell and Very Much Worse.

I realised I'd been living on paracetamol for low grade fevers for most of the year. I realised that I'd had a cough that had never really gone away. I realised I was losing weight, always complaining of exhaustion. I wasn't walking far, struggled to get the kids to school or get around a supermarket. Even by my usual standards things were Not Right.

By the time I went into the local hospital, I could barely get out of bed, my face was swollen, I was coughing so much it was choking me and I'd lost more weight.

Because of the strong, chemo-style immune-suppressants I take, this not a good thing. As I recently explained Humira (or Adalimumab) increases the risk of severe infections and most commonly, TB. It is not just a "Oooh, be careful if you take this drug your head will fall off" standard warning - it's in bold type on the front screen of the website;

"Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB."

It goes on to say;

" In HIV and other immunosuppressed persons, any abnormality may indicate TB or the chest X-ray may even appear entirely normal.[1]"

I never really blogged about my stay in the local hospital (Worthing). It was so odd, so traumatic and surreal, I wasn't quite sure what to say. Dangerously, they made me doubt myself. 

It all went fine in A&E. The doctor who admitted me immediately knew why a nasty fever and persistent cough in someone like me needed to be treated with caution. He admitted me to the Acute Medical Unit ( the clue is in the name!) 

A House Officer came to see me that night. He'd just finished his gastro roatation and was newly on the respiratory team! Perfecto. He did all the right things. He explained how because of the Humira, they would need to test me for "things we wouldn't normally test a 38 year old for". He put up a broad spectrum IV anti-biotic and took blood cultures and ordered a sputum test. So far so excellent. I have no idea who he was but I'm confident he'll make an excellent Doctor. 

The following morning, a female consultant marched into my room with the House Officer and the usual team of heavily cowed minions. 

She barely spoke to me (never a good sign that, when they talk above you rather than to you.) and the first thing she did was shout at the House Officer "You'd better start realising this is NOT gastro". With that she started scrubbing lines through my prescription chart and tutting. 

She listened to my chest and said that it was clear. She said my X-Ray was clear. She said I just had "a virus" and I could go home (?!?) I hawked up my best throat rattle for her, but she said I "probably had a touch of asthma". I started to say I'd never had asthma, no-one in my family had ever had asthma and that  
my symptoms had been going on for 8 months, but she swooshed out of my room majestically in a puff of
disdain. I heard them discussing my X-Ray in the corridor "Well, the bronchia are a bit thickened but that doesn't mean anything"

I was shocked and upset - what had changed in 12 hours? I must have cried a bit, because the nurse asked me what was wrong and said she would call the doctor back.

Dr Arrogance never returned however, and an energetic, kind South African doctor appeared to be "assigned" to me. Nonetheless, Dr Arrogance had made her mind up. With none of my copious notes, (which reside at Addenbrookes in Cambridge where I have all my bowel treatment) no idea of the history to my symptoms, without even weighing me. We were done, thanks awfully.

I was 6 Stone 9 by this stage. Both of my children were at home with raging temperatures, but they wanted to discharge me! I was mystified. Every time I tried to get out of bed, a nurse had to catch me, but Dr Arrogance still insisted I was fine.

Dr South-Africa did his best. He ordered a load more blood tests, but kept telling me how great my bloods looked. I explained over and over that they always do (even when my bowel was one huge festering infection my bloods barely roused themselves to notice) but he became more and more frustrated, his hands tied.

In the end, at 9pm that night, as I very calmly tried to run through the reasons I didn't think I was fine, he exploded. He screamed at me - yep screamed - for twenty minutes, an incoherent attack. It was so bad and so loud a nurse came into my room and looked at me as if to say "WTF?" but he ranted on regardless.

Crying and scared, I stopped answering him in the end - it was just making him worse - and stared at the bedspread.

Finally, he stormed out, but I was so exhausted, so poorly, I barely knew my own name. Half an hour or so later, he came back. His attitude had totally changed. He'd printed out the drug leaflet for Humira and seemed to have realised I wasn't just being a silly little girly. I pointed out, very reasonably, that in the 17 years I'd lived in Worthing, I'd never once come to his hospital and said "I know something is wrong". With my 28 years of crohn's experience, did that not tell him something?

*Sigh* I could go on, but I might as well cut a long story short. Dr Arrogance had made her mind up, Dr South Africa turned out to be frustrated but his heart was in the right place. There was a split - he and my nurse clearly didn't think I should go home, but the decision wasn't their's to take. They washed their hands of me.

**This is a long story, so more tomorrow


  1. I'm speechless Sue!..when I can be coherent I will come back and say something Please take care of you...*hugs* x

  2. Thank you for blogging about these experiences Sue. All best wishes to you and your family.

  3. Luckily for me it wasn't me the consultant shouted at when I was on high dependency ward. It was my sister, whom I've been estranged from for eight years... She tried to tell my consultant why I'd got so ill and he told her straight! Not seen her from that day to this :)

    Keep well please Sue. You and others who know who they are have created something almost miraculous. You have all brought us together xxx

  4. I'm so sorry to hear all this. If being constantly ill wasn't bad enough you know have all this to contend with.

    Imo you should complain. I mean really kick up a fuss as thats not the kind of 'treatment' someone as obviously unwell as you should be getting. Too many people put up with that kind of abuse when they shouldn't have to.

  5. What happened to listen to the Patient bedside approach!

    I have kidney problems,and sometimes I go to the Doctor when I feel real bad.Last time I went,I started saying my Kidneys were playing up again.He said something daft like,how do you know its your Kidneys.So I retorted,I have had Kidney problems for the past 15 years and I know the symptoms by now.

    Trouble is,they once used to give me Trimethropin which used to make me feel better in a matter of days.But they wont give them me now because of the problem of taking to many anti biotic s.So all I get is bring in a Water sample and drink loads of fluids.So I don't bother going any more.Every water sample comes back clear,even when I feel very ill.Well according to them anyway.

    I once passed a load of blood clots and white matter clots in my urine.So I do know what bad infections make you feel like.

    But they seem to think the best approach is to let the infection go away in its own time.I am not even monitored for routine blood tests.It makes you think sometimes they want us to pop our clogs to save them money.

    Defunct none working Capitalist Unit.

    Exterminate,Exterminate,Exterminate,maybe Cameron is realy a Dalek.

  6. Sorry to hear about this sue.There is no excuse for the doctors to act this way.Surely they of all people can see your medical records as easy as blinking so why dont they.NO its wrong on all counts.So heres a thing...lets all complain together every time something like this happens.Does the hospital have email,twitter,any contact at all where we can all send off a complaint.Faxs are good as they have to read them...
    I saw on a programme where a man was refused his paid for seat on a plane for being to big for just one seat,in spite of the fact he could fit in one,and he got all his twitterarti(he is an american author) to bombard the airline...Twenty minutes later full apology and seat on the next flight and a request to please ask your twitter pals to stop now..They didnt like bad publicity..So lets get on it folks...we get enough shit without crappy docs and bad attitudes.I have to say if anyone doc or no feckin doc shouted at me for twenty minutes or even one then he would have been told in no uncertain terms to STFU ,maybe not how some would deal with that but even in my mid fiftys i dont suffer fools AT ALL ,and JUST some days dont you just want to say..ok F**k this enough is enough....BUT yeah lets all complain together from now on everytime this crap happens to one of us and we get the call.Like call me dave says we are all is this together ..we have tried the nice approach so maybe a being a bit more direct in such instances might focus some peoples minds a bit in thier treatment of the sick/disabled....text email twitter calls...ready when you are...

  7. You and me both sue although i get very violent in that situation i say to the staff you had better treat me with respect as your being very disrespectful or you can call the police.
    They then realize that I'm very serious so then start to fall in to line and act respectful

    You often here on the news of the staff being abused by patients but in my long experience it's only in the past 7 years in which the staff are the guilty ones in abusing the patients i regret to say and i see it all to often

  8. Six and half stone is a very dangerous weight and you should have been kept in hospital as the chance of a heart attack is very high
    very few people can live at that weight
    I'm 6 foot two and my record low was 8 stone and you have to stay in hospital until it goes to 8 and half and in my case i was in hospital for 6 months so i know full well the difficulties

    I dont know your hight sue but you need to try to get to 8 stone if you can as you dont look like a six footer (lol)

  9. Appalling, I found out the other day that my friend who probably had a Tia who was admitted with blood soaking her dressing gown on her birthday they even got the date wrong as there is no 31 st November, she had to hitch 8 miles home in the middle of the night

  10. Sorry to hear you are unwell, but I am glad you are getting proper help. Love to you and yours - particularly Dave who I imagine is busy calling in favours to help with the kids (hard enough, even for those of us without your extra problems).

    You seem to have become rather more stoic over the years, by which I mean, less likely to go to hospital! Do you think this is because of your family, or PTSD, or have Drs become more confrontational and less, well CARING. Does holding out make it worse when you're admitted, or do they treat you more seriously because you're more ill (sounds like not, but I am curious).

    Love to you all, Corinne

  11. Going in to hospital today is only undertaken as a last resort
    years ago it was a wonderful experience with care and commitment from life long dedicated staff

    today it is a very painful experience as the staff in general are from a David Cameron back ground with no thought other then themselves a sign of the times I'm told

    When I'm bad i stay at home and hope for the best even if it means staying in bed for a month at least i can stay sane which is a darn sight better then going into hospital and feel suicidal

  12. Lovely of you to care guys, but please don't contact the hospital!!! If it turns out I have something I need to sue them for, that definitely wouldn't help x

  13. Ah Suey try and rest too?????eventhough your ill. Well your blogs are ace because it makes me think aw it s not just me. You really have to be strong in your head or have a good advocate to navigate etc system. Well hope they give you a really good overall check and find some good treatment or medicine. Lots of thanks to you, your family and Spartacus team. X

  14. Oh and if anyone is wondering why people like myself don't get on with hospital staff it's very simple most of the staff doctors included aren't even qualified and by a good margin

    It's a bit like watching the bbc's apprentice the candidates seam OK on there cv's etc but to put there so called skills in to practise well as we all know that's a different story

    I have known many of the leading doctors and surgeons in my time but sadly as time has moved on they have all gone into retirement or worse passed away and now all that's left is a shambles

    I do know a few surgeons left thou at the top in bowel and bladder / heart /knee so even today i can and have saved many lives over the years and that gives me a great comfort to be able to set a person on the right course of treatment instead of like so many of the public do is guess and with there own doctor also well out of his depth you can be sure the overall outcome isn't going to be a good one

    sadly for me and despite having the very best of care in my earlier years my overall health couldn't be saved this was due to having
    TB/diphtheria /whooping cough/and Scarlett fever as a child from which 50 years on i never fully recovered

  15. Sue i think you know now we all care and just want you to get the best care and it seems that aint happening.My point was really to say that non of us should put up with shabby treatment from anyone especially the very profesionals we go to for help.Its just not on and maybe my suggestion was a touch on the reactionary side but really in the end i think we all know that if we dont all stand together we fall alone and thats the simple truth of every aspect of this long fight.The strength really of the spartacus report really lays in the number of people involved and what we can all do for each other.It gives people a focus and there is a power in that and if we need to we should use that whnever we have a need to...take care..

  16. How horrible, I'm so sorry. I've been yelled at by a GP for crying before; it's such a betrayal of what medical practitioners are supposed to stand for. I am lucky in that I have a great doctor now; all I can do personally is remember that not all are nasty and incompetant.

    1. Now I think about it, with GPs that's kind of like an abusive personal relationship, isn't it? You don't leave because they're not always horrible to you and you think you won't find someone better, possibly only worse. Anyone in that situation though, give it a go if possible. Not much help when it comes to hospital doctors though, obviously.

  17. I can just imagine a Doctor screaming at Samantha Cameron. Thank God for my imagination.

    A very ugly experience Sue. God forgive them.

  18. I understand how frustrating it feels, how scary too. Doctors in the ER sent me home once saying I was having a nervous breakdown when truth is that I was screaming from pain. They didn't even try to examine me because i was labelled as suffering from depression. Good luck and get well

  19. Just like those out of touch politicians we pay the wages of these doctors,and other health pros,and i am not saying they all do a bad job but they should always be told errr hanng on a minute sunshine...LISTEN to me and bloody help thats what you trained and are paid for.I mean come on most of us know more than is usual about our own health and that should be obvious.I am rapidly coming to the conclusion that we get what we put up with and maybe like the french we should bark back when its needed.It does seem the only way to be heard with people like these.

  20. Franklin Percival.14 April 2012 at 18:48

    Speaking from long and tedious experience Sue, if you must have something wrong with you, keep it simple so that the professionals have some chance of understanding!

  21. In our local hospitals there are all kinds of notices about zero tolerance against violence/abuse to staff.Quite right too but when the shoe is on the other foot what are you supposed to do? It's horrific what you have experienced and my heart goes out to you.

  22. Hi Sue, long time no speak, hope it is ok to put the following link on which shows why we need to get rid of this government as quickly as possible for the damage it is doing to the most vulnerable in society.

    Keep up the good fight,

    Best regards,

    Red Rag - The truth will out!

  23. If you are being treated like this when in hospital you must, to the best of your abilities (I am addressing this to everyone btw) make a note, try to record the dates and times and what happened and the names of the staff doing it and if possible any other staff who may have witnessed the incident.
    Try to keep a record of every such incident, however big or small. Once you are more able (eg when you are on the mend or out of hospital) contact the local PALS and also you can contact ICAS and you can submit a formal complaint.
    It is not right that people are treated in this way. The vast majority of medical staff are good, and they care, but unfortunately there are a minority who range from uncaring to actually dangerous.
    Although they are few, the impact they can have is terrible.
    If you submit your complaint it may be that there is already evidence or documentation from other people and together the evidence can be used to suspend the staff that have committed these acts, and they can be dealt with by the appropriate bodies.
    Please believe me that most doctors, nurses, hcas, radiographers, etc are very good and do care, and for the most part these are hard jobs that entail long hours, antisocial working patterns that carry health risks, a heavy workload and often low pay for the level of work. Most healthcare professionals are doing the job because they do care and from experience of friends and family, the bad apples are known to staff and reported. Having the complaints from patients too can help weed these peopke out and get them out of the profession.