MRSA Resources

TALK FOR BIOMEDICAL SCIENCE CONGRESS

MY STORY - By Tony Field. Chairman MRSASupport

June 16th 2000. A date to remember. Not for the millennium but for a break in the garden!

It was 7 o’clock on a Friday evening and my pathetic waving from a prone position, with a handkerchief tied to the handle of a strimmer, to attract the attention of my wife had to defer to Coronation St. It was on early you see, due to a football match! When the ambulance was called she was asked if I was still breathing and told to go and check! So we had the bizarre shout along the garden for all the neighbours to hear–

“They want to know if you are still breathing”.

The X-Ray confirmed rt. femur broken and I was held in the local A&E Hospital for nearly three weeks until a bed was available at the Royal Orthopaedic.

During the stay in the A&E hospital, I was confined to bed on traction with a Thomas splint, at the top end of which was an enormous metal hoop with a leather covering, this meant that I couldn’t wear pyjama trousers.By the second week I had bedsores, and was constipated. The most notable points I remember from this stay was the incredible work rate of most of the nurses, and the absolute lack of hygiene discipline from and to the patients. An example of this was Michael who deliriously talked about the women he had been with, played with his private parts and detached his catheter many times in full view of everyone. (I still wince when I think about it!)

The nurses would admonish him and replace the catheter without cleaning it.

Then I was placed next to a man who I can only describe as the bravest I have ever met. Stan was an ardent football fan. He told me that regularly he would visit the training ground of his favourite club, Aston Villa and watch the players’ training sessions. He had retired just three months previously. A keen motorcyclist, he rode a Honda 250cc twin and on his way to watch a training session one day he was hit by a truck emerging from a side road. When I met him in that ward he was minus both feet, and in the week I was privileged to know him, never once did he say

“Why me?”

During the early hours of the morning after Sister Shirley’s laxative was administered, the bedpan was called for.I found it somewhat difficult to clean myself while hanging onto the overbed handle, and the nurse refused to help. We don’t do this now” she said, handed me the roll of paper and then walked off , telling me to press the buzzer when I had finished! As you can imagine I had a little difficulty with this. The result was that with the already weeping sores on my buttocks I had to lie in my own excreta until the next shift.

I believe that was the origin of my being infected with MRSA.

After two and a half weeks I was moved to the Royal Orthopaedic Hospital where the operation to repair the damage to my femur was done on July 11th. I was held in the High Dependency Unit for nearly three days feeling grossly sick and unable to eat or drink. Eventually, late on the third day I was moved, and I thought I felt better, but I still couldn’t eat. After the pain control device had been taken away I suffered the “cold turkey” that we have heard about and seen with drug addicts. That feeling was dreadful and I shall never forget it. The sight and smell of the food trolley also made me feel ill, and I must pay tribute to Mary, the kind domestic lady who insisted that I had the build-up drinks she would bring for me.

Three days after returning to the ward I was told that I had an infection and would need to be isolated and I was moved to an alcove. After the withdrawal symptoms had subsided I had the most extraordinary experience. During the night I was lying awake listening to Classic fm trying to blot out the sounds of snoring. I became aware of being above the clouds with my brother who had died in 1979, when his transplanted kidney rejected. In the last month or so of his life he became very bloated as the fluids built up in him. He told me that the consultant had accused him of not keeping to his diet and this upset him considerably as he was a man of great personal discipline. In our surreal meeting I said to him- “I can understand why you wanted to die with all the prodding needles and tubes being inserted into you, being told what not to eat and feeling so ill.” Then I noticed in the distance a white shining figure. The immediate desire was to go towards it. But John indicated a queue of people, all quietly moving that way. The atmosphere of peace and tranquility was intoxicating. I felt completely at ease and very content.I asked what was happening and he told me that the people in the queue were-

waiting to die.

I was disappointed I wanted to join that queue but I realised that I still had too much to do and told him so.Then suddenly I was aware it was 5.30am and Classic fm was still playing.

Many people would say this was a dream, and I would agree with them but for one thing. That piece of music I knew well.. and it has always been a particular favourite of mine. From the Chorale Prelude by J. S. Bach, the piece is called Watchet Auf (Sleepers Awake).

From this point on I began to recover.

It was a total of seven days from the operation, before my appetite returned, and it wasn’t for hospital food. I suddenly craved some Danish Blue cheese and biscuits which I asked my wife to get for me. The aroma permeated the ward for some time and many questions were asked about the state of my feet! I then felt well enough to ask the staff to let me get out of bed. After repeated requests and repeated warnings that I would not be able to stand. “You will faint because you are anaemic,” they said, but finally they relented.

The big move eventually came and I was dismayed! My leg would not bend. I didn’t faint and I stoically put up with the pain. Just to sit up was a joy. With clenched teeth and an unconvincing smile I insisted on sitting there for over an hour!Then I wanted to go home, but was told another two weeks on antibiotics were required. I finally escaped six weeks and four days after I broke my leg.

Two days before I was discharged I was told that I had MRSA which meant nothing to me other than that I had felt very ill. I had never heard of MRSA before and I was told that it was nothing to worry about!

This was a very cruel deception!

AT HOME

I noticed myself for the first time in the bathroom mirror, a malnourished, flesh hanging shadow of my former slightly overweight self. I had lost nearly three stone or nineteen Kilo’s. Six weeks after being discharged, the antibiotics finished and it seemed that I was somewhat better, but lethargy was a problem. I could sit and doze in a half conscious world for hours, and then not sleep at night. My morale was unusually low and I wondered what was wrong. I kept asking the nurses and registrars, but was fobbed off with “it’s just an infection- nothing to worry about it will go.”I would force myself to do things and convince myself that I was OK but I became tired so quickly it was painful.

My thigh became swollen on the scar and I pointed it out to the doctor who was on a routine visit that day. An immediate call was arranged to the clinic. A sample of fluid was drawn off and analysed.

I still had MRSA!

Two days later the swelling burst leaving a trail of blood and discharge all the way up the stairs. From that day in October 2000 until April 3rd 2003 with only a brief respite for 6 months, the sinus wept copious amounts of fluid and had to be dressed two and three times daily, because the smell was obnoxious. It was also extremely embarrassing when it ran down my leg. At the next clinic I asked the registrar ‘what precisely is MRSA?’ and was told the long words. I then started to read about it. A bleak read, especially as a registrar told me that I had it for life.

Yet another cruel deception!

I spent many hours trying to find out how to get rid of it.

On getting up in the morning I would squeeze my thigh until it hurt, to get out all the exudate - it might not have done much good but it made me feel that I was doing something. I was extremely angry and waging war on this bug! 10 months later it was necessary to operate again to remove the prosthesis, which had become badly infected. A temporary spacer was put in and I suddenly felt much better! I knew that it had gone. With the spacer I found that I could bend my leg and I looked forward to being able to walk again. But it was not to be.

After six months the scar re-opened and started weeping as before. MRSA was back.

During this period my son returned from a backpacking trip to the antipodes. On his travels he acquired a book called Spontaneous Healing by Andrew Weil MD. (USA) I would recommend that you all read this just to see whether you can find the inspiration that helped me to overcome this bug once and for all.

The final operation was done in April 2003. The spacer was removed, and the infected femur cut away to within three inches of the knee. I was then expected to lie with traction for three weeks or more while it was determined whether the infection had been cleared. However, I found that I could pull my knee towards my chest with the 4kilos of weight attached to it and I decided there and then that I would go out as I was - and would manage. The thought of a prosthesis from below the knee up to the hip filled me with foreboding after reading how the bug attaches like barnacles to metal and plastic.

While nothing was said at that time, I knew if that became infected I would lose the leg.

After much opinionating and argument about whether I would have control over my leg. “It will be like a rag doll and will just drag behind you”. The registrar said, and he wouldn’t hear of my trying to stand. I demanded to see the consultant and he agreed with me that as the infection had returned after six months from the previous operation, it would be only right to leave it at least that long, and not only the six to eight weeks they had planned.

POSTCRIPT

The postscript to all this is that MRSA devastated my life for three years. My right leg is now 4 inches short without the femur, but somehow it works and I do have a high degree of control over it! Due to the protracted period of the infection I was forced to give up my job. I was struck off the register of Independent Financial Advisers because I did not submit any business within a twelve month period.

This has severely reduced my income for the rest of my life.

However I will take my lead from Stan who I mentioned earlier, and refrain from asking

“Why me?”

I know that I am privileged to be here.

There are more who are still victims many of them some years away from retirement, facing the rest of their lives on much reduced pensions.

Because they will never work again.

Also many more have died prematurely, leaving loved ones.

The official causes of many of these deaths have the blanket titles of ‘Septicaemia’, ‘Multiple Organ Failure’, ‘old age’ and ‘Natural Causes’.

Thus hiding the true scale of the infection.

It has been pointed out to me that the official figure of 721 deaths claimed for MRSA bacteraemia is actually 721 per 1000 bed days. In England there are 138,000 beds used or available on any one day, so the true figure is more like 99,498.

MRSA Support members John Lake, John Wardell, Ed Hopkins, Ken Archer, Geoff Morris, John Pinchin and myself have all had prolongued treatment for MRSA at a minimum extra estimated cost of £200,000 each. In the case of John Wardell this is ongoing. Ed Hopkins, Ken Archer, Geoff Morris and John Pinchin have died. That is only seven of us and there are now over 600 members.

MRSA Support was formed in April 2003 by eight sufferers, out of confusion and anger at the misinformation given to people who had been infected. The universal complaints were the same as stated in my own experience. We wanted to inform people that there is much they could do to protect themselves from these infections by just taking simple measures like not putting bare feet on the ward floor. Our membership rose to 25 by September 2003 when we published our booklet, A Patients Defence.

It was reviewed by The Observer and overnight we gained 50 members. Our membership is now 600+ and we have close ties to groups in America, Canada and Ireland with the newly formed Infection Prevention International.

We naively thought that we could help by supplying these booklets to Trusts free of charge due to generous sponsorship from Smith and Nephew. All except one Trust in Scotland refused them. This is a great disappointment to us, as without exception all trusts’ literature about MRSA is falsely reassuring or downright misleading.

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In the 1998 Revised MRSA Infection Control Guidelines for Hospitals it clearly states in Part 2 at 2.2.1 that “alert” organism surveillance should be a minimum requirement. Our interpretation of being ‘alert’ is regular searching and testing for environmental contamination, yet this is not done unless there is an outbreak. It is absurd and foolish to screen patients before admission and then bring them into a contaminated ward and in contact with colonised staff. There is also the implicit accusation of this being the patient’s fault, “you have brought it in with you” is the common cry from staff who wish to show their superiority.

Well I have news for them, so did they!

Detergent used for cleaning is cheap and weak and there have been many validated reports of bacterial growth actually occurring in the solution, so the claim that detergent and ‘elbow grease’ is adequate for cleaning and disinfecting in a hospital is specious. Also the so called dry mopping does not kill the bugs.

Dr. Layla Sanai in an article in the Guardian described the cleaning solution she saw as foetid and the mop filthy. An infection control nurse recently stated with great authority that cleaning in their hospital was always done with detergent and water at a temperature of 38 degrees C. This is within a degree of the very temperature at which I am told the bacteria is cultured! A trust issued new uniforms to their nurses with instructions to wash them at 60 degrees C. When it was pointed out that the label stated 40 degrees C. The managers said it was OK to wash them at 40 degrees.

Really?

If the bugs can survive a standard 40 degree wash in the controlled condition of a washing machine they will obviously do better outside in a bucket of water.

If two patients on a ward are afflicted, the staff “take infection control very seriously” and swing into action to control it. Bad luck on the two who are given it!

All this time we have been under the impression that when infection control was talked about, it actually meant prevention. In view of this realisation that all efforts are geared to ‘controlling’ outbreaks of infection, we would ask you to support our stance, that infection prevention should be the priority, with infection control secondary and regarded as failure.

I ask you now to consider five points of evidence for infection prevention which have emerged from discussions and research by MRSA Support members over the past two and half years:

• During the SARS epidemic all hospital acquired infections in a Canadian hospital were cut by over 85%. Overshoes, gowns, masks and head coverings were used in the draconian measures taken.

• Forensic scientists use masks to prevent contamination of evidence.

• The evidence of the nursing manuals from the period before antibiotics came into common use, that masks are necessary-

• On the DoH own website there is a complete rundown of how the dutch dealt with the problem by Margreet C. Vos of the MMID in Rotterdam.

• Professor Strohol in Austria had a difficult problem with MRSA and experimented with Acticoat dressings for all post operative wounds as a barrier to infection getting into or out of the body, this resulted in a dramatic reduction of over 85% of all HAI’s across the two hospitals he was responsible for.

To say that the main reason for using a mask is to protect the ‘healthcare professional’ from the patient is disrespectful to the people they are treating. If the mask is to protect the healthcare professional from the potential risk of infection from the patient, then it must be valid to protect the patient from the potential risk posed by the healthcare professional. When there is a risk of iatrogenic transmission infection to the person who requires any invasive procedure, or treatment to an open wound and including urinary catheters, that risk should be minimised by every means possible; so a mask which prevents infected particles from the nose and throat being directed towards the wound or vulnerable site is vital. To dismiss masks as unnecessary is to deny a simple aerodynamic principle, as well as the contamination from the nose and throat.

That principle is the ‘drag’ effect of air currents made by peoples’ breathing. This will direct floating contaminated dust particles in the same direction, as surely as the wind picks up the autumn leaves and takes them in the direction it is blowing. If that direction is a wound site then it poses a high risk of infection to that site.

All the research quoted to me by academics and scientists on nasal and throat colonisation concerns only the swabbing of noses of staff. There is no mention of the range of breathing and its effect on the surrounding air. Most inspections of invasive sites such as catheters and canulae and changes of dressing can be done within the three minutes I have been told a mask is effective for.

True and effective asepsis for any invasive procedure cannot be claimed unless the breath is held or a mask is used to deflect it away from the vulnerable site, because the hands will always be within the range of breathing. The hands can be washed and gloves worn in vain if the nurse or doctor is colonised in the nose and throat.

To those who tell me “there is no evidence”. I would say- “Absence of evidence does not mean that evidence is absent.” It just means that it hasn’t been sought.

My words today have the evidence of history to support them. Since the relaxation of aseptic techniques and the abandonment of disinfectant for cleaning, MRSA and all other HAI’s have increased year on year and the short term savings made have cost us dear in lives, maiming and expense.

On behalf of all our members and those people suffering in our hospitals throughout the country I ask you to revisit all the so called evidence and review it in the light of our evidence of the Red Cross manual, the SARS epidemic and the work of Professor Strohol with Acticoat wound dressings, forensic scientists and most of all, the experience of many retired nurses.

One of our members, John Lake, who lost his lower leg due to a botched plate and screw job and subsequent MRSA, has requested me to ask whenever I have the opportunity – ‘How do the bugs get into the nose in the first place?’ Do they have a little ladder to climb up the nostrils, surely they must be breathed in from the surrounding air?

In conclusion, because I am acutely aware that surgeons consultants and registrars rely heavily on your expertise and judgement, I reiterate my plea to you to review the evidence on masks and disinfectant with the objective of infection prevention, not control. Why fight these bugs with ever more sophisticated antibiotics and the inevitable resistance from them, when they can so easily be avoided?

I am now completely clear of this infection, and I intend to keep well away from hospital treatment for as long as possible!

Thank you all for listening. MRSASUPPORT