Clostridium difficile Support

[heretoday]

Apologies this is going to be long ........
Dad’s story – some of this written before he died……………I have cut and pasted from emails I sent to Graziella through December when she was an amazing help to us as a family………….I hope it will give you an idea of what we have gone through. I must point out that I do not have any complaints about the care Dad whilst he was in hospital from either the Medical or Nursing Staff despite my frustration with them on occasion…………..I think it was due to their perseverance that he survived as long as he did during his last few weeks………

………….Dad is 85 years old and prior to breaking his hip in early August was very active and busy, he's mentally all there (apart from the odd bout of confusion now). He fell whilst power washing the back patio.

He was admitted to our local General hospital and the hip was plated and screwed; he was then transferred to one of our two community hospitals for rehabilitation - what a joke. He was put in a side ward - the last ward at the far end of the corridor which was about the size of a jail cell with only one window very high up. This room was also right next to the toilets. The only people he saw passing were nurses and patients going to the loo and he was regularly visited by several patients who were totally confused who continually handled his stuff. He very quickly became depressed here and because of this they rushed his discharge home; total time in hospital 3 weeks; he had not had any rehabilitation for his hip. The intermediate care team took over with 4 carers per day and one weekly visit from the Physio. They did not encourage him to move and Dad was being very stubborn and was saying it was hurting. Medication was Omeprazole, Aspirin, Tildiem, and he began an anti depressant. He was also drinking a lot of an antacid.

By now he had become to complain of severe indigestion when he ate and he had lost around 2 stone from just prior to his admission (he can't afford to lose that kind of weight). He rang me one morning and he had "collapsed" after being to the loo. He said he had really bad diarrhoea. We rang our GP and he admitted him back to the General Hospital; by now the GP suspected a malignancy. He was on the medical ward for three weeks very quickly deteriorating; he was being pumped full of antibiotics. He had a CT scan, an ultrasound and they wanted to give him a sigmoidoscopy but he had become too weak. He was refusing to eat, to get out of bed and they were just letting him. The last two days he was here they put him on a glucose drip and the difference was unbelievable. I believe that he had decided that he had enough and at one stage told my husband he wanted to die! He was finally transferred to our other community hospital (I had refused to send him to the other one and would have paid for a Nursing Home). Our GP saw him that night and was absolutely disgusted and unbelievably angry with the General Hospital (the GP is also a close personal friend of ours). He warned us that Dad might not survive and if he did we'd be lucky if he went home; well thanks to the fantastic care he had from the Nursing Staff, the OT and Physio's and our amazing GP Practice he came home on the 25th November very motivated and insistent that he would cope as much as he could by himself - he had the same care package as before. Total time in hospital this time 7 weeks. Medication during this period was Omeparazole, Aspirin, Iron Tablets and an antidepressant.

On the friday he rang me and said he did not feel too good and to my shame I though here we go again as that's what he used to do when he felt lonely. Popped over and made sure he was Ok and then back to work. Very early saturday am he rang and said that he had had diarrhoea and could we pop over to help him clean up - he was very embarrassed. He then had some four or five further episodes over the weekend - nothing that was very violent until very early Monday morning when it was horrendous and he lost consciousness. It was very smelly and like water. We rang the ambulance and he was admitted via A and E to a surgical ward. We spent 4 hours in A and E. When he finally got to the surgical ward they thought they were having a patient with constipation! They were absolutely fuming. As soon as they decided he would stay there they were fantastic though - put him on fluids, checked the bloods, etc. By now he was in kidney failure because of the dehydration. They have since told us that they did not think he would survive the night; they started him on some kind of antib. On Tuesday he had a CT scan and when I got home from visiting I had a phone call saying basically - if we don't operate he will die; if we do operate he will probably die but there is a small chance of survival, apparently his colon was in a very inflamed state. Dad agreed to the op and we basically said our goodbyes.

On weds morning when we walked in ready to be with him till he went down the consultant and his senior registrar walked out of his room and said we are not operating as he is showing a very small sign of improvement. I now know that they had put him on Vacomycin on Tues evening. Later that day the staff nurse told us they were testing him for C diff which was confirmed on Thursday. He was on three antibs - Vaco, Flagyl and something else which they have now stopped. Over the next few days he began showing an improvement but by the weekend he was becoming wheezy and starting to swell - they initially said that this was too much fluid and the kidneys would sort it out when he started eating . The GP also doesn't seem to understand where he got it - he seems to think that if he had caught it in either of the first two visits to hospital then he would have shown the symptoms earlier - not when he was becoming stronger.

He is still not eating much - only when we force it down him and even then very little - the staff are very good with him. He is totally lucid. He is very swollen and they say it is because of a lack of protein cause he hasn't eaten. He is complaining of general pain and he has bed sores - not their fault. They are also trying to get him to get up = but he won't so he has lost all his mobility again. They cannot get any blood out of him as his veins are bad - one of the staff nurses managed to get a line in yesterday but it was very hard work. Still not eating - one of the nurses mentioned TPN Feeding over the weekend; my husband who works near the hospital (its 40 miles from home) is going to try and see a doctor today cause although the nursing staff are excellent they do not give you the full picture. His notes are not in the room so we can't even look at them. I do not know what meds he's on or what they are for. What should I be asking !

I just seem to need to know is this usual, he seems to be still having loose bowel movements - not many; but everything I seem to read says that this means that he is still infected. He is still being nursed under isolation procedures. But even then though the nursing staff are good - sometimes they wear aprons sometime not - always gloves but one of the blood techs - no gloves nor apron nor did he wash his hands when he'd finished.
Dad was recovering well and was just about ready to be transferred (stools formed and so on) and he had a mild heart attack and started presenting with a chest infection - he was very poorly; in fact they called us up to the hospital as they thought he was at the end.......yet again he has surprised us all and has pulled through and is much better. He was transferred to the Cardiac ward and is now on quite high levels of diuretics and has just finished a course of antibiotics. Basically they told us it was only a matter of time before he passed away and although they would treat his problems actively it was only to make him comfortable. Yesterday they told us that he could be transferred closer to home - well today they have said that the community hospital have refused to have him because of loose stools.........

Now when I asked the other day they did not tell me what the antib was but today his nurse has confirmed the recurrence of the loose stools. I asked what antibs he was on and she said none but he has just finished a course of Cipro - now that rang a warning bell with me and I googled it an got....................

Fluoroquinolones are considered high risk antibiotics for the development of C Difficile and MRSA infections (Wikipedia)

- 2nd generation Fluoroquinolones include Cipro

Because of the loose stools he cannot be transferred !!

Dad passed away on the 11th January.......It was an urine infection that finally got him ......he had improved from the situation we were at the middle of last week but on saturday he was very confused (from being very lucid the day before) and he was hallucinating.....on Sunday although he was quite unresponsive - answering questions and responding coherently but not alot. We had call from the staff nurse later on (as she had promised) to say that he had become very cold and his blood sugars were low but he had taken some milk and glucose and they’d put a warming blanket on him and he had responded, when we rang later he was still responding coherently and agreeing to things and they again said they would ring. Didn't sleep much as we were waiting for the phone but just before 6 they rang to say that he had passed away peacefully in his sleep they had just checked on him and he was Ok and they checked the next cubicle and as they left it happened to glance in and he had gone - in the space of a couple of minutes - I couldn't have hoped for a more peaceful end - Mum's was very hard ........we went to the hospital and saw him and he was at peace. The rest of today has been taken up with the usual stuff after a death .......I'm just waiting to see what the death cert. will say cause the c diff was definitely a contributory factor.
Got the Death Certificate and it does not include C- diff Part 1 says (a) Urinary Sepsis and Part 2 says Colitis, Congestive Heart Failure after much thought and reading of the forum I decided to see if I could get the Certificate changed and on advice from Graziella rang the hospital and finally got put through to the Bereavement Nurse who said she would help me try to get this done…………Well she has just rung - she has spoken to the Registrar at the office where I registered Dad's death who has checked with the GRO in Southport and I need to write to the Registrar explaining why I want the certificate changed and she ( the Bereavement Nurse) has to ask the Dr who registered the death to write stating that she is Ok with the amendments that I want to be made and then all the paperwork needs to be sent to the GRO. The nurse has said that she cannot foresee a problem with the Dr nor the Registrar as the C-diff is documented and she also knows the dr concerned and cannot see her making a fuss, well bad news I am afraid - even thought the Junior Dr was willing to change the death cert the Consultant wasn't............he said that he had reviewed Dad's notes and that even though dad had a positive c diff test on the 30 November he tested negative in mid december ! He also said that as the certificate said colitis then that covered the c diff ..............I asked for this in writing .............(more anon).

I asked the bereavement nurse that if dad had had a negative c diff test in mid december why were they still treating him in isolation and why was he still having the c diff antibiotics. Why were they so concerned about the consistency of his bowel movements; why were they still advising us not to let his elderly brothers and sisters visit all the way through to the day of his death. Why when he was transferrred from one ward to the other did the Sister ask the ward cleaner for a deep clean (we heard this as we were leaving). Why were the community hospital refusing to let them transfer him until he was confirmed as clear by microbiology..................I am sure you mentioned to me in amongst all this that if you are on antibiotics for c diff then a test can show a false negative / positive.......

I received a further message from the consultant via his junior doctor via the bereavement nurse that if I wanted his refusal and reasons to change the death certificate in writing I would have to make an official complaint !!!! The impression I got was that he knew a lot more than I did and I had a cheek to request a letter ! Well to be honest the bereavement nurse positively encouraged me to complain - I don't think she liked his attitude.

One of the thing's that has upset me was that I was unable to touch dad other than through a pair of rubber gloves in the weeks leading up to his death - I couldn't kiss him on the cheek as I said goodbye as I used to - what if there was no need for that and that he was negative for c-diff all along ( although to be honest I cannot believe that).

I have contacted the complaints department and have given them a general idea of the complaint but I'm not sure how to go from here - I need to write it down - and I am not too sure - I do not really have an issue with his care at the hospital during his illness as the care he had was excellent but - what if he was negative ?

Thank you so much for staying with me

N

[roy]

So sorry for your loss
You might want to show the Dr/Consultant a copy of this document.
http://www.hpa.org.uk/web/HPAwebFile/HPAweb_C/1232006607827
They have a legal obligation to name c.diff and not just call it "colitis"
You seem to be being a little leniant about the care and treatment dad recieved.
What you describe is far from ideal and needs investigating.
Not many Drs would consider giving someone Cipro if they have any history of c.diff let alone a recent one.
The sequence you describe suggests that he had active C.diff untill he died.
It could have played a big part in his death.
To take things further you will need to get a copy of his medical records, its your right to have them but you might have to pay a charge for photocopying, they must only charge to cover their costs.
I hope you get the answers that you obviously need to get closure on this.
Peace returns a little quicker if people are honest with you.

Best wishes


Roy

[Annie]

Hello 'N'
I am so sorry to read your story, please accept my condolences for your loss.

I agree with Roy that there do seem to be many shortcomings in your dad's treatment and care. From what you have posted above it seems that many of the Professionals thought so too.

With regards to complaining - you have, in your post, raised the questions that you want answers to. You can put all these questions to the hospitals concerned because you are entitled to answers, not just for your own peace of mind but because if things have been handled badly, they need to be put right for other patients. In your letter make it clear that you cannot move on until you understand why certain decisions were taken.

As far as I understand it, unless the Death Cert states 'Pseudomembranous Colitis' it will not be counted as a c.diff death. Stick to your guns on this if it is important to you, many people on here have challenged the cause of death and been successful.

You have asked about the negative tests - testing negative after a bout of c.diff is not recommended as a test of cure. The official guidance is to treat according to symptoms. This is a very grey area because 'loose stools' can be caused by many things and post c.diff they should always be cautious and continue to isolate and carry out barrier nursing.

It's very sad that you felt you could not kiss your dad, I think things should have been explained to you more clearly. The risk from contact with someone who has c.diff is in spreading the bacteria or swallowing the spores yourself. You should have been able to hold his hand and kiss him, providing you washed your hands immediately afterwards there would have been minimal risk to anyone.

We are happy to provide further help and support with anything you need, there are many people on here who know exactly how you feel.

Annie x

[roy]

The more I read your message, the more I (and many others here) relate it to our own loved ones demise.
Tomorrow would have been my mums 93rd birthday and I am certain that had she not contracted C.diff whilst in the hospitals care she would still be here.
Mum was "processed" the same as your dad,
Intended respite care, intended care home, but they would not take her because the guidelines say she was still suffering with C.diff (definatley correct)
Can't return to normal own home, eventualy the hospital says "we will actively treat the infection but do you want us to resus her if she stops breathing? (severe damage for a few days painfull life.)
Ask questions and demand answers
Dad either died from, or died with C.diff.
Either way its right for it to be recognised.
Again
I DO know how you are feeling and will be honoured to chat if you need to talk.
Even if its only unrelated triva
Use the PM if you want to

Roy

[heretoday]

Thanks to you both for your comments very kind thoughts; I'm sitting here at the computer struggling with how to word this letter because to start with I'm complaining about the consultant's attitude to my request to change the death certificate and then of course I have concerns about the care and treatment dad received if he had tested negative to c diff.

Of course I was very unhappy about the care dad received during his two previous visits to the hospital and am convinced that he caught c diff on the medical ward during the second visit but at the time dad was still alive and because of what was going on in trying to build him up and motivate him to eat and regain his mobility we decided not to make a fuss - he didn't like a fuss.

On his admission to what was subsequently diagnosed as c diff other than the four hours in a & e and then the admission to the wrong ward I really have no complaints at all - they were very unhappy when he initially turned up from a & e but at no time did they even suggest transferring him (they did not know he was infectious) during that first day and to be honest in my layman's opinion he had arrived the right place. He had been admitted to a surgical ward and if he had been admitted to the medical ward it would have probably taken several hours for even a junior doctor to see him (I know this from past experience) whereas in the surgical ward one of the registrars was waiting for him to arrive having come down from theatre, within about 10 minutes the senior reg on the team arrived and the sister presented her with his paperwork insisting that she write him up for fluids as he needed them ! to use her words ............Within the hour he was being treated and the consultant had arrived to see him.

All during the time he was there his treatment was very good.....the only complaint I had was that at times it was hard to get hold of a doctor but the nurses were more willing to let us know what was going on that on other wards. But just before and during the Christmas period the contact with the doctors became better . On the day he was transferred to the cardiac ward my son and I had a meeting with the senior registrar and the senior sister on the ward an she took us through everything about his condition and the prognosis. But as we arrived for the meeting his consultant turned having rushed down from surgery to see us quickly and apologise for having to transfer him ! would you believe it .....

My complaint about the care is really only if he had had a negative c diff test why did they continue to treat him in isolation.

Annie they were quite clear about avoiding touching him other than with the gloves and also to avoid touching the bedclothes and of course the hand washing, etc. They had also carefully explained to dad about why they gloved and aproned and he understood. In fact he became very strict with us even when he was really ill about making sure we washed our hands, etc.

I have been a silent visitor to this forum since dad was diagnosed and cannot believe that I did not know about the horror of c diff. Like everyone I have read about hospital acquired infections and a friend who had had a serious road accident had left the same hospital as dad to the same cottage hospital at the same time had MRSA which I thought was awful - I had heard about c diff and realised that people died of it but never realised how awful an illness it was and also how awful the treatment could be on an elderly person and the stats were terrifying I think deep down I realised that Dad was not going to survive; people assume that he died of heart failure but I make sure they know that he died of a hospital acquired infection; I also preach about hand washing to anyone I know who is going into hospital.

Reading the forum through his illness and after (when I was deciding whether to query the death cert) has been a help and comfort to me and graziella has been an amazing support.

Oh dear I think I've waffled again - its just so easy to put this down in writing so thank you very much for reading. On a more practical note I have just contacted the bereavement nurse again as I want the date of the negative c diff test.

I will also contact the hospital to see how much it will cost to get copies of dad's notes;

Nesta

[roy]

10p-20p a page is normal but expect up to £50 for a full copy.
There will be a hell of a lot to trawl through!

Roy

[heretoday]

CAn I have your comments on this please : Thank you

DAD'S NAME

Further to my recent telephone call I write to list my concerns about some aspects of the care my late father, named above, received whilst he was a patient at xxxx; I also have concerns about the information we were given as a family during that time as well as concerns about some things which have happened since he passed away.

At point 1 I have written a summary of what happened during my late father’s hospital stay and the information we received as a family during that time. At point 2 I have also detailed what has happened since I requested that my late father’s death certificate be changed to show that he had been infected with c diff during his last weeks. At point 3 I have detailed my concerns about aspects of points 1 and 2.

Can I say that although I have some concerns about some aspects of his care and the attitude of some medical staff we, as a family, appreciated the care my father received from the staff and doctors on Dulas ward especially Mr x and his Senior Registrar who we knew as Dr y ! The care and concern I have received since his death from z one of the Bereavement Nurses has also been excellent.

Thank you very much




















1. My father had had three periods in hospital since August 2009; 7 – 26 August at xxx and yyy, 21 Sept to the 25 November at xxx and zzz, and 30 November to 11 January 2010 at xxx. He was admitted to b Ward, xxx on the 30th November 2009 with severe diarrhoea, on Weds 2nd December we were told that he was being tested for a C-diff infection and that they had begun treating him as if he had it; on Thursday 3rd December they confirmed the presence of the C-diff infection and continued to treat it aggressively through the month. Infection control procedures were in place and continued until his death on the 11th January. He was critically ill for over two weeks and we were told that it was extremely unlikely that he would survive this illness. Beyond all expectations he began to improve until he suffered a heart attack just after Christmas and became seriously ill again; at this stage we were told yet again to expect the worst, he was transferred to c ward (cardiac) and yet again his condition stabilized although we knew by this time he would not come home; on the 9th January he began to deteriorate again and we were told that he had an urinary infection, after deteriorating over the weekend he finally passed away in the early morning of the 11th January.

2. Imagine my surprise when I received a copy of my father’s death certificate it did not show the C-diff. It is my understanding that if a Hospital Acquired Infection was a contributory factor either directly or indirectly to a patient’s death that it should be listed in the relevant section of the Death Certificate. His death cert shows Part 1 says (a) Urinary Sepsis and Part 2 says Colitis, Congestive Heart Failure. On the 25th February after much thought and research I decided to request that his death certificate be altered to show the c-diff infection as in my opinion the c-diff was directly attributable to his death because as you can see from the above the admission on the 30 November with the C-diff is what started the downhill slide to his death; on his discharge from zzz on the 25th November and during the days preceding he had recovered well from his prior illness and was ready to come home. I initially contacted the hospital and finally spoke to a Bereavement Nurse who looked into how I could do this and I was told that it was a relatively simple procedure subject to the agreement of all concerned – namely the Dr who signed the Death Certificate and the Superintendent Registrar of the district where the death was registered and The GRO In Southport. She, the Nurse, would talk to the Dr in question an I was to write to the Registrar which I promptly did.

I was very upset when in late March I was called by Bereavement Nurse and who said that the Dr in question had referred my request to her consultant, a Dr b, who refused to change the Death Certificate as although Dad had had a positive C-diff test on the 30th November he had then had a negative test later in the month and that colitis was listed as a cause of death and that was good enough to show c-diff. I was very concerned to hear this as several things had occurred because of the diagnosis of the c-diff (see my next point). I asked her if she could get this in writing from the consultant – and she agreed to ask. Two days later I got a further phone call saying that she had had a message from the junior dr saying that the consultant had said “If she wants it in writing she can make an official complaint”. This attitude I found to be very upsetting and the lack of sympathy from this consultant angered me.

3. My concerns / complaints all arise from the comments made by the Cardiology Consultant Dr b …
a) The refusal to put his reasons for refusal in writing and his lack of care in the statement “If she wants it in writing she can make an official complaint”.
b) It was my impression that in his guidelines on hospital acquired infections published in October 2007 the Chief Medical Officer stated that if a Hospital Acquired Infection was a contributory factor either directly or indirectly to a patient’s death that it should be listed in the relevant section of the Death Certificate.
c) I also understood that it was only pseudomembranous colitis should be shown as a symptom of a c-diff not just “colitis”
d) I get the impression that this consultant does not want a c-diff death on his stats!

e) Now as to his care prior to his death.
(i) Dad was nursed from the 30th November to his death on the 11th January under infection control procedures – that is we had to glove up and put aprons on and wash our hands thoroughly. We were told that it was not advisable for his elderly brothers and sisters to visit due to the risk of infection. This was extremely upsetting to them as they knew that he was quite probably dying and they were unable to visit him. We were also advised not to bring his 4 year old grandson in to see him.
(ii) Dad was being treated with both Vacomycin and Flagyl until just a few days before his death.
(iii) Dad was refused a transfer to a hospital closer to our home due to the fact microbiology refused to confirm he was clear of c-diff as he was still having loose stools.
If he had tested as negative in mid December why did all of the above happen. The fact that his siblings could not visit caused a lot of distress to them both during his last days and after his death.

f) I am not a medical professional but in my research I have read that if a person is being tested for c-diff microbiologically when on a course of Vacomycin then a “false negative” result can be caused and that the entire clinical picture must be looked at not just a single item. I can appreciate that the precautions and treatment in item d) can be taken as the entire clinical picture is being looked at; but if that is so then shouldn’t the same clinical picture be looked at when looking at the factors which caused his death – not just one single test in a month !

g) My final query is where did my father catch the c-diff ? Was it on d Ward during October when he was pumped full of antibiotics and had become so unwell during his time there that when he was transferred to zzz the medical staff were doubtful that he would get to a Nursing Home let alone back to his home. He had spent most of the last five months at the various medical institutions. It has been very difficult to access the c-diff statistics for xxx

[roy]

Brilliant letter!
You might add that you may at some stage request a copy of your fathers notes to confirm that he was being treated for C.diff and to satisfy yourself that the diagnosis of urine infection was in fact confirmed by reliable tests and not just guesswork following a simple dip test

Roy

[heretoday]

Thank you so much - sending it later today......i will add the notes bit ...

N
x

[heretoday]

Well it is now two days past the 20 day period they have to reply - when I spoke to them on Monday they waffled a bit and said the file was out with one of her colleagues. If I have not received anything from them by Saturday I will write again.

In the meantime I requested copies of Dad's records - the complaints dept. had given me a form with an addendum that no charge be made so I made the application; as I had not received any acknowledgement I rang them last week and they are awaiting the permission of two doctors (out of six the others have replied) before releasing the papers; they are all ready ! Now surprise surprise one of the doctors is the consultant whom I made a complaint about. The other is the A?E consultant who the records co-ordinator says he always has to chase! Personally i feel that this is a further indicator of the consultant's general attitude of "don't give a @@@@" .....................

More anon.
Nesta

[heretoday]

Hi - have recived the notes - well some of them the rest are missing and have spoken to the complainta advocate in our area - there is no-one independent in North Wales who can review the notes for me ! Can you believe this ! Any suggestions where I go from here

I also have some concerns about some bits in them

N

[Nadia]

Hi Nesta,

Unfortunately most members on here who have requested notes have to trawl through them themselves and learn to decipher all the medical jargon.

To have the notes independantly reviewed you would have to find a Dr. willing to do this but most won't touch them unless it's via a solicitor. And as you are only at the Complaint's stage you can't involve solicitors.

If there is anything you are stuck on there are lots on here who have learnt a lot and maybe able to help you with deciphering medical terms and I'm sure Graziella would be more than willing to help.

Best wishes
Nadia

[heretoday]

Thanks nadia

I do have someone who will look through them but had been hoping to avoid asking them. "Spoke" to Graziella yesterday and I think I know where I;m heading next.

Saw your post about Arrowe Park - its disgusting - what's bad here in Wales is that the stats are not easily available. One of the questions I have asked is how many cases of C diff they had in the hospital while dad was there ?

N