How my story started

How my story started, but would like to say, I am now back on my feet, but wanted my story to go out, it is not always the illness that hurts but people can make it worse.

My mother called an ambulance out at approx 6.30 am Monday 25th April 2011, after my illness escalated over four days I was suffering from severe headaches, vomiting, freezing cold one minute and boiling the next. I had joint pains, and my eyes were painfully sensitive to light. I had a stiff neck and all sounds were magnified.

The 999 paramedic speaking to me over the telephone said my symptoms may be meningitis and dispatched an ambulance. One of the ambulance crew suggested to my Mother that the symptoms may only be a migraine. The other crew member questioned me in the ambulance before moving off, asking if I was sure I wanted to go to Hospital, I explained I was trying to hold out till Tuesday (being a bank holiday) but could not and yes I really did need to go to Hospital. I gave the ambulance driver a list of my symptoms, because it was so painful to talk, or lift my head up, he asked why I had sun glasses on, so I had to explain the light was very painful to my eyes.

When we arrived at the A & E Department, I was place in a side room, which was better, as there was no light. I caught the attention of a passing nurse for a ‘sick bowl’ soon a young female doctor came in; I went through all the symptoms and then vomited. The Dr placed a cannular in my left hand, and said they may need this if they had to get medication into me. The Dr tried to take a blood sample from the cannular but was unsuccessful, so blood was taken from the ‘crook’ on my left arm. I was sent off for a CT head scan, and x-ray, blood tests showed a high CRP.

I was then moved to A.M.U Female (Acute Medical Unit), and placed in a side room. There were no blinds or curtains to the windows, so the light even though I had sun glasses on was causing me pain and headaches. Even being in an isolation side room, the noise was non stop, slamming doors, flushing toilets, as I was next to a sluice room on one side and a kitchen on the other. The following were not offered so I had to ask for a ‘sick’ bowl, a pillow, and nightgown. The pillow came but no nightgown so I remained in my day clothes that I had arrived in. My body temperature would go sky high and then I would go so cold that my teeth where chattering. My mother arrived and was very surprised there were almost no isolation procedures in place considering I may have a notify able disease meningitis. My Mother said that I had been given 2 injections to stop the vomiting and an IV drip, the 1st lot of drugs stopped the severe joint pains. She could not get over the fact that there were no blinds to the windows. That I had been put to bed in my day clothes, I had only a rolled up blanket for a pillow before asking for one, and just how much noise surrounded the room despite the fact that noise and light compounds the symptoms. My mother spoke to a ward sister asking if it would be possible to move me to a quieter and darker location. No other room was available, but the sister said she would have a ‘sheet’ put up to the windows, it never happened.

3.30pm, A female Dr attempted but failed two or three times to take a spinal fluid sample via a lumber puncture in my spine, while at the same time verbally instructing a junior Dr on the procedure (without asking my permission) My mother remained in the room throughout and noted no sterile area was set up either in the room or on me. I was in too much pain and feeling too sick to take note of this, but I did feel more a guinea pig than a very sick patient. Eventually the female doctor gave up trying and said a more experienced anaesthetist would be in later to retrieve the sample. I had no information beforehand that I should not get out of bed for at least two hours, which meant I should have gone to the toilet before they began.

Between 3.30 and 8pm, no anaesthetist arrived to take the spinal fluid. I was still in severe pain in my head and had been sick, I was unable to eat or drink between 4 pm and 8 pm I was given 2 Paracetamol. No one mom spoke to had any idea what my condition was, contagious or not. By 10 p m it was clear the spinal tap would not take place so no diagnosis was possible, so I was treated for a migraine! One nurse placed what seemed to be two tubes onto the cannular in my hand but when she tried to inject the medication the pain was so bad I cried out. After that the cannular became very painful. In the end one of the night nurses or a Doctor had to remove the cannular and replace it.

Throughout the night, the noise, and the alarm for the IV drip kept going off, and sound was so painful to me. A very kind Dr came in my room, after I had been sick again. He took further blood samples from my right arm (no bruise unlike the one left on the 1st day they took blood), He was the first person to sit and explain what was going on, I was so scared as no one had explained anything since my arrival 6.30am Monday. He was concerned about my raised temperature and being frequently sick, so that’s why he decided to take more blood samples, he was so kind, but I never saw him again. To the best of my knowledge, I saw approximately 14 different doctors during my stay and had to run through the whole history each time of how I started to feel ill and the symptoms. I was so tired of the pain, being sick and the light hurting my eyes that it became harder and harder to repeat myself, I just felt very scared, exhausted and very much alone.

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Tuesday 26th April Re the spinal tap the anaesthetist arrived to do my spinal tap, with a female junior Dr and once again information passed back and forth without asking my permission to use me as a guinea pig (I was still lying in the same soiled sheets from the day before and my day clothing, except my jeans. Mother was present and noted that no sterile area was set up in the room or on me or the bed. My worst fears were confirmed when this Doctor also failed four times to take a spinal fluid sample, I began to feel distraught and said he would have to stop, but the Dr explained that until they identified the particular meningitis strain they wouldn’t know how to treat me, and a spinal tap was the only way of doing it. So although I was in a good deal of pain in my back I allowed one more try, this also failed. Just as I had reached the end of my endurance a Surgeon (Irish) stepped in, and had another three attempts before finally gaining a sample. Before he could connect the tap, I felt fluid running down my back onto the bed (I have photographic evidence to show 12 needle marks in the centre of my back). I was told I had to lie flat on my back for six hours and not get out of bed. As I am unable to use a bed pan it was a very uncomfortable time before I could get to the toilet.

I later learned that the failed lumber puncture attempts could have been avoided if I had been taken to theatre and an M I R scan done to show the exact location for the spinal tap because of scare tissue from a riding accident, this would have prevented 12 needles in my back, and a very stressful and painful experience which stays with me today Wednesday 27th April 10 past 3 p m, a nurse and a porter entered my room, and began packing up my belongings into green plastic sacks. I sat there stunned and my Mother asked what was going on. The curt answer was “you are being moved to another ward” my mother said that no one had given us prior warning, the nurse replied “ well its my job to move you now” As I was being wheeled out of the room in my bed my Mother realised that many of my personal belongings had been left behind. Our nurse who had been very kind and always tried to do her best for me came into the room to do checks and was as surprised as we were at the sudden move and apologised for the obvious stress it had caused.

I was moved to a side room in ward 18. And I asked for the blinds to be closed and the lights off, explaining that my eyes were very sensitive and painful to light and part of the viral meningitis symptoms that the test results returned from the Hartland’s Hospital had confirmed. Unfortunately every time a nurse came in, the lights would go on again, they appeared unaware that I had viral meningitis and not a mere migraine.

While there were kind and considerate drinks ladies, one not so helpful person Wendy. I had been too ill to sit up and drink a cup of tea, a nurse said that when I felt able to ask for another tea. Later when the kitchen lady Wendy came in I asked if I may have a tea, and was told “ No” and my water jug was empty so I lay there for over an hour until my Mother arrived, by then I had become dehydrated an my temperature had risen. Had I not had a relative to care for me for around 10 hours a day I would certainly be neglected.

There was no notification of my (contagious) disease on the door and that quiet and darkness were an absolute necessity to recovery. This meant a constant stream of very noisy staff coming and going, domestics, catering staff, nurses all oblivious to my needs simply because there was a complete break down in communication. One Dr even apologized for the bad experience I was having at his Hospital. Another Dr explained that there were only four Hospitals in the country that had knowledge of meningitis and the nursing care required. During my stay it became very clear that Good Hope was not one of the four! My room was situated opposite the nurse’s station which seemed to be a collecting place for gossip or arguments and raised voices everything was clearly audible, nurses discussing their love life, laughing and joking. A nurse arguing with a patient in another side room and making her cry, later I found it was staff nurse Parry, who made my time in Hospital unbearable. I think the staffs are unaware that their private lives and loud voices are disturbing to very sick patients whose main concern is a quiet environment and rest. This is where I feel a change of procedure should be brought in for a solution, essential to this change would be communication and consistency of care at all levels of staffing.

Date of admission by ambulance Monday 25th April 2011 to The Good Hope Hospital A&E Dept, transferred to the A.M.U Female (Acute Medical Unit). Then on Wednesday 27th April I was further transferred to Ward G18, unit number N763437.

April when ever Staff Nurse # entered my room she made a point of switching the lights on despite knowing that due to a symptom of viral meningitis my eyes were extremely sensitive and painful to light, hence the room being darkened. If I had been given notice before hand I could have put on my dark glasses to protect my eyes.

At 7.00 am on the day in question I felt very ill, and was given dicofenac, by 8am my temperature had risen and I began vomiting. I asked for the IV Paracetamol drip, and other prescribed medication for pain relief which would bring down my temperature and the vomiting would cease. I was given what I believe was an oral liquid morphine (Oramorph). At 9 am I asked again for the IV that had been prescribed for me, 9.30 am Staff Nurse # gave me pills, I begged her for the IV drip the only medication proved to quickly reduce my temperature and stop the terrible head pain and vomiting . The alarm sounded indicating that the IV bag from during the night had emptied, the alarm kept on going but no one came to turn it off., the sound of the constant alarm magnified the pain in my head. At 10 am I asked again for IV and was told they were still trying to get it. Dr # had informed the nurse that I was to have the IV drip as soon as possible.

Staff Nurse #, manner towards me was rude and hostile to the point that I felt bullied and even afraid of her. I asked her for fresh a ‘sick bowl’ because there were three full bowls at the side of my bed.

She left the room but after waiting 10 minutes I was forced to call out and a cleaner was kind enough to bring me one. (The other 3 bowls containing vomit remained by my bed) I felt that because I had asked Staff Nurse # if she would turn the light off, she was not too happy about it and also not pleased with me asking for the IV. Staff Nurse # informed me “It was not my job to tell her what drugs I should be having, that it was her job to tell me when and how” even though Dr # had told me I would get the IV straight away. I found her rude and hurtful with her answers, no compassion at all and vengeful.

I had been vomiting over one and half pints. I asked staff nurse # for a ‘sick bowl’ again, as before none came, so had to call and ask someone passing by.

10.30am three doctors came into my room, Dr #, his registrar and I think a Dr #, I asked if I could have a diazepam during the day, as my neck had gone very stiff again adding to my pain, and stress that I could not stop crying. During the Doctors visit the three bowls of vomit were still in my room, I felt so ashamed and had to ask the doctor if someone to remove them.

I informed the Doctors that I did not want staff nurse # looking after me and that she would not arrange for me to receive the IV Paracetamol drip, or even a’ sick’ bowl’ and described her hostility towards me.

I also reported to Dr # that my right leg had become numb and felt like a dead leg and I was unable to move it. Dr # said that it may have happened when I had the spinal tap. I was so frightened not knowing if the lack of feeling and movement would be permanent. I had a number of doctors asking me about the pain in my leg, I made it quite clear each time that I had never mentioned pain. I had reported the leg as numb and being unable to move the limb not pain.

By 11am, I had vomited over one pint. I asked Staff Nurse # for another ‘sick’ bowl, she handed it to me in complete silence and finally the IV drip was put in place, (3hours overdue) most medicines where an hour to one and a half hours late, causing vomiting, and severe head pain to return, and felt as if the brain itself was swelling. Dr # had always said that pain control was optimum, but the medication had to be consistent to avoid the drugs wearing off and the pain attacks recurring, which unfortunately was the case the majority of the time.

Later on I heard Staff Nurse # at the nurse’s station, saying how I had lied, and I was wrong, and she was not happy with it. Then she came into my room, spoke closely into my ear saying “why would you complain about this? I gave you the drugs, you asked for.” I said it wasn’t the drugs I complained about but the IV drip that I didn’t get. She said” There was no need for what I said to the doctors and I should not have done it” She then left the room very angry.

That day, Staff Nurse #, who I had complained about previously in the day, came in to inject an anti sickness drug into my Cannula, she injected with such force and at such an angle that the pain was too much and I cried out. She said “don’t be silly”, and “it’s not that painful”. She said she would have to flush it out as I had moved; she flushed the cannula with such force the fluid shot up into my face. I began to cry, she said sharply “stop crying it’s only saline”. I tried to get it out of my eyes and she told me

“to stop being so silly”. I started to cry again, I felt vulnerable and there was nothing I could do, and no one to help me. Then she moved the IV stand to the left of my bed and so far away that the needle was pulling away from my hand, causing a good deal of pain where the cannula was taped to the back of my hand.

She then took my blood pressure but did not remove the cuff afterwards and left the room. I was left with bowls of vomit beside me, and No water to drink. Another nurse came in an hour later and removed the cuff from my arm.

My mother (An ex nurse) arrived and asked me why I was so distressed and upset and in obvious pain? I explained the dragging needle was causing me pain so my Mother brought the IV stand around to the right side of the bed enabling me to rest the painful hand across my chest and relieve the unnatural position of the needle.

Staff nurse # came in very angry and said “you should not have moved the rod arm, to other side of the bed” Even though I explained it had always been on that side since Monday.

I said it was too painful in the position that she had left it in; she just muttered under her breath and walked out. I was in genuine fear of her. She behaved in a cruel, intimidating, and aggressive bullying manner, leaving me totally demoralised. Since leaving Hospital I am still getting flash backs of her intimidating treatment towards me. And I am unable to face a return to the Hospital to attend out patient appointments.

I was too frightened to press the buzzer for help in case it was Staff Nurse # who entered the room.

I noticed that unlike all the other nurses, when drugs were being given they would always check my identity bracelet especially as I am allergic to certain, drugs. Not once did Staff Nurse # make this vital check.

My mother asked to speak to a Senior Nurse to discuss the alarming situation. Sister # I believe came in at 3 p m and requested that Staff Nurse # refrain from entering my room or administering any medical assistance. I had showed the sister the cannula, the hand and wrist had begun to swell and bruised so the Sister decided it should be removed. (I have photographic evidence of the bruising and swelling)

My mother requested to see the Matron in charge To place a formal complaint regarding Staff Nurse # appalling behaviour towards her very ill patient. Also a point of concern was the lack of communication between all staffing levels,( lights, people coming in shouting, nurses not knowing what was wrong with me, and asking me what was wrong!) That pain relief was not being administered on time, and request that Staff Nurse # would not enter my room.

We had also reported Staff Nurse # behaviour to Sister #, Sister #, Dr # and Dr #.

I would ask you to investigate these matters and I look forward to your early response.

I hope the following action will be taken to make changes in procedure. That Staff Nurse #attends a retraining programme in patient care, or monitored. If Staff Nurse # has the confidence to mistreat a 45 year old business woman, how may she be acting toward the very elderly who may have no one to turn to for help, or ignored by a disbelieving relative?

I took this matter up with the Parliamentary and Health Service Ombudsman, as I felt so strongly that the Staff Nurse# that was in charge of me should never be allowed to work with such coldness, on many letters and emails was told I could not know what processes would be taken, but that she had been dealt with, I only have to take their word for it and I pray she is never allowed to be left alone with anyone else, and I also pray they took on board that curtains etc have been put into place

Dear Miss Stephens

Further to my e-mail below, I have now had the opportunity to review the additional information provided by the Trust. I have discussed also this with our manager and we are satisfied that the Trust has now taken sufficient action in response to your complaint. As such we are not proposing to investigate. And this reassurance that your complaint has been taken seriously and appropriate action taken.

I Kind Regards

#####

Assessor

Parliamentary and Health Service Ombudsman

Thou now I am back on my feet, I still feel a little upset, that it is not always the illness but the treatment that can cause stress.

Thank god my own doctors, where more helpful and Good Hope

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14 Replies

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  • so sorry to hear you had such traumatic treatment while trying ti fight off such a viscous illness. My daughter was only 18 months old when she was ill , and even with a young one we had a number of "fights" on our hands. I truly hope you get some peace very soon . xx

  • Thank you, yes i have moved on, the way i look at it, i lived and the rest is now not important to me, there are so many others that have had it worse than me. i hope your daughter is much better :)

  • Unfortunately this isn't an isolated case regrettably. I was discharged around 10 days too early after having a very serious attack of VM which nearly killed me. Suffice to say two days after being discharged I was back in A&E unconscious and with collapsing veins to the point that the paramedics couldn't find any means of injecting anti-biotics into me.

    A truly awful experience for you and I do really understand how you feel as it was similar for me including a 'bank' nurse who left the TV in the side room on all night so she could watch it whilst taking my obs every 10 minutes regardless of the pain I was in. In all I was discharged a day and a half after my Glasgow coma index was 7 (6 is pretty much curtains in terms of recovery I'm told) with heart rate dropping through 26 and BP top an bottom in double digits.

    You might also want to mention your experiences to the Care Quality Commission (www.cqc.org.uk) who regulate healthcare providers and monitor standards of care as this could be symptomatic of an embedded problem.

    Glad you're on the road to recovery, hang in there!

  • thank you, I have always said the illness it self is bad, but hell the treatment from the staff, made it 100% bad, I even asked the board of NHS, why a poster could not be put on door, to show that noise and light hurts, they came up with the crap of human rights, and confidential of the patient, OMG I would have signed a waver to have it on my door, after hours of people just walking in and out, putting lights on before I had chance to cover my eyes I think the confidential of the patient is going over board, and we should be given the right to say what we can have on the door to out room . And i am hanging in there :)

  • Actually the response you got from them about a poster being on the door is total horse crap, it isn't any different from having a 'nil by mouth' sign above a bed. My daughter is a second year student nurse and even she thinks it's because they can't be bothered rather than to protect your human rights. I had VM 10 years ago and there is light at the end of the tunnel although life will never be the same.

  • yes you are right, and yes life will never be the same, but i was mad as a hatter before VM, LOL, so to be honest apart from the odd mind blank, i do not think any one would notice haaaaaaaaaaaaaaaaaa well you have to laugh :)

  • OMG!!!!! This happened me!!! It got that bad my husband had to put curtains up for me.LOL How are you feeling now??

  • Hi Lemie. well it been a year this week, i am doing great, i have the odd day when i my mind, just cannot recall things, somtimes my body seems to over heat, but i said if i every get it back will NEVER go to Good Hope, as they did not have a clue, well done on yoru husband, what a clever man to do it, i just wish they took on bored about putting a sign up, to say why we did not want lights on, room to be in the dark, people crashing around, i mean the meningitis site gives a free poster to show what should be do and not done but the admin at NO hope as l like to call them said, they could and would not do that for anyone, human rights and all that crap, the staff chanegd over every 4-8 hours, so went threw the same fight each time thats why i had to sign myself out, i am sure they where trying to kill me off.

    thou i got threw it, i still hold a little fear that it will come back, do you? and how are you now, have you had many side effects (oh yes, i seem to get ill much faster now, from colds, to be a little tired)

    Mandy x

  • hi there i am recovering from it to xx although i was quite luck in terms of care at whipps cross hospital they ave me an eye mask to help as the blinds was nt the best i was in a week although i think they let me out to early i was thankfull for nice bed and quiet, they did have a sign outside my room so everyone came in with masks etc make me feel like an alien ! there was one awful awful nurse who ignored me "forgot"to turn the machine on for my iv drip so i was 2 hours late getting that dose and she would refuse me painkillers and if i said i was in pain she would say just go to sleep .... so i dreaded her coming in .but there was lots of lovely nurses .. so i was lucky and upon being in hospital an hour i had , had chest x ray ct scan and lumbar puncture , then swabs did they take swabs from your mouth nose and groin ? i have to go back 1st may for tests as they found my white cell count extremley low and something about liver function but they didnt explain ... can i ask how long did it take you to recover ? my head and spine is just so painful i need to recover xx

  • Hi Kel80, to be honest, it took about 2 months to feel right, and then a few more months, to get over the nightmares of the treatment (bad nurse etc) I to had a nurse that would not change my IV. But I found the more I talked about the better I was, it took the fear away. I took B6 and Vit c, and zinc, this helped me bring my body back, the thing is thou we all look ok, there are inner scares that we carry, so talk to people, trust me now I tell the story with a joke and a smile and trust me 11 months ago I thought I would never do that, you must eat better, and do gentle walks, try and get a bit of sun LOL when we get it, ok I now catch colds faster and the odd ailment here and there..

    ok re your spine, with you there hon., I have what I call memory back pain, when I think of the 12 needles they did over two days as non of them could get it right, I get a back pain, so I use a tens machine which you can get form Lloyds chemist, ok this may sound mad, but I also found VIC rubbed in helps it, when I do get a flash back, I just rub my back, and tell myself it ok, its just my brain sending messages, and all ok.

    re head, ice stick again from boots or £1 shop, so when you feel pain come on put this on, if you use too many pain killers, this will infact bring on headaches.

    buy good pillows and make them in a V shape to sleep this will help, you can even raise the base of your bed with a brick, this will also help with blood flow

    Fear it self is the after illness, take control, use vic on body and even your head (mind you eyes LOL) when you feel ill and in pain, stop, slow down, ue ice sticks, good cup of tea, and tell yourself, ok MENG>>>> had me, but no longer, allow your fear to talk to you, then talk back, ok all this sounds mad as a hatter, but to get threw your next stage you can take control, you will be safer each week, each day your mind and body will heal. allow a treat here and then, remind your self you kick mengitt... in the butt and you are getting threw it. any time you need to talk just relpy threw this site we are all here for you hon :)) well i hope this helped you X

  • thankyou xxxx i just felt like i should be pushing myself .. i am worried about my job also .. they have been great but for how long who knows ... how long did you need off work ? x i have been given adcal-d3 tablets but they are awful ,huge and have to chew them !!

  • Hi hon., been freelance, I had to go back to work, two weeks after LOL, lets just say felt like I was working on a ship, sea legs, and felt very much a odds LOL

    b###y hell just looked up your adcal- d3, not sure if I would want those, saw the side affects, thou I see you can get them in lemon, me I stuck to Holland & Barrett (PS get there loyalty card) and take vitc, b6, zinc, thats enough me thinks.

    the boring thing is, the old way is the best way, fish and veg etc, seems are great grand parents new how to eat and get well.

    have a word in H&B shop and ask them if there is another type you can take, me I look up everything b4 I take them, not always go with the 100% of what docs tell me, as my body tells me how I feel and what I like and need, inc extra dark choc here and there :)))))))))

  • i will go and speak to someone there is one about five mins fromn my house xx thankyou xx you have really helped me xxxx

  • Any time, and remember, when YOU!!! will get better, you will look back and think, WOW I got threw that, I can do anything now. me when I was better I went threw my home and removed things I no longer needed, and took it all to the charity shops, then I bought some picture frames and filled them with (LOL) photos of trees they made me feel at peace, and I bought plants, all sounds loopy LOL, but it helped, new me, new start. haaaaaaa

    but always here, if you need to chat or worried about anything!!!

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