DISTURBING HOSPITAL MISTAKES

 Before i continue i would like to make it clear that from DAY 1, when we walked through the doors of C2 (childrens oncology) we were ALL made to feel to feel VERY welcome and became part of a "family". A family that no parent or child ever wants to become part of, but never the less a family that will always be there for you and will go to incredible lengths to make sure your child is well looked after. The kindness from EVERYONE from the cleaners and nurses right up to the surgeons and consultants is second to none. This makes what i am about to say even harder to understand and to accept.................

A FEW PHRASES,

ISOLATION - This is when a cancer patient who is already in hospital becomes unwell  and is isolated in a seperate room of their own. This is for their own protection and also for the protection of others on the ward. Once isolated then blood cultures can be done to determine the cause.

NEUTROPENIC - Where the WBC (white blood cell) count has dropped below 1. At this stage there is NO immune sysem AT ALL. If at home at this point it is wise to stay indoors. One germ inside the body at this stage can be fatal!

FEBRILE NEUTROPOENIA - When somebody under going chemo gets a temperature of 38 or more. If at home then they are rushed IMMEDIATELY to hospital. If already in hospital then straight to ISOLATION. Blood cultures are then taken to determine the cause of the high temperature and I.V antibiotics are given.

BARRIER NURSING - EVERYONE who enters the room MUST wear apron and gloves.

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JUNE 14  2007 - On walking through the doors of C2 we were told that Becki stands a 30-40% of getting CURED. For this statement to be true it would mean that the last 30-40 children, diagnosed with NEUROBLASTOMA, out of 100, never had adverse reactions to ANY treatment they had with no signs of ANY cancer, forever! If a CONSULTNT can make this sort of profound cockup what does it tell you about their honesty......


JUNE 16  2007 - Becki rushed from ADDENBROOKES HOSPITAL to KINGS COLLEGE HOSPITAL London, for a stent in her liver.
Kings College Hospital were totaly UNAWARE that Becki had cancer! She was on morphine and they DID NOT know how to control the pain.WE had to tell THEM!

Back to Addenbrookes. Becki needed many canulars', most took several attempts, some up to 12 attempts. Reason given, "cant find vein properly". I was with her and ALL veins were OK.

With hygiene clearly important, more so on this ward than any other, EVERY person HAS to use handgel before entering the ward. EVERY SINGLE day i watched NURSES, PARENTS, CONSULTANTS, SURGEONS, REGISTRARS, DR'S and general STAFF walk straight through the ward doors WITHOUT even looking at the handgel, never mind using it!

I lost count of the amount of nurses who came into work with COLDS and STOMACHE BUGS! This was on a ward where ANYONE, staff or PARENTS were IMMEDIATELY sent home if unwell. Remember that nearly ALL children on this ward are neutropenic and EVERYONE of them is seriously ill with cancer. One germ could mean DEATH! I myself, was sent home for 48 hours with a stomache bug. It broke my heart not being there with Becki but i knew if i stayed it could and probably would be detrimental to Beckis' health and also to all the other children on the ward. When i got back the nurse told me that when they have stomache bugs they take immodium and still come into work. When i asked her why they still come into work when they are ill she told me its because they havn't got enough staff to cover!

MAY 13 2007 - Becki has surgery to remove tumour. Surgeon tells us 98% was removed. 3 days later our consultant tells us only 40% was removed! Some mistake by the surgeon eh.......

Becki in isolation after surgery. ALL nurses and anyone coming in should have gloves on. In one day i counted at least 4 seperate nurses on over 10 ocassions treat Becki WITHOUT gloves. I mentioned it to the ward manager and she apologised and said it wouldnt happen again. It did, it happened EVERY DAY and EVERY NIGHT! But it wasnt just us who noticed it, it was common knowledge with other parents who had also tried to do something about it but had got nowhere.

After her operation, Becki had an ephidural for the intense pain she was in. She was constantly in pain and dicomfort. It was like none of the drug was getting through to relieve the pain. It wasnt! I lifted her gown up and realised what the problem was.The ephidural had some how moved on its own (this is the conclusion i have come too!) as it wasn't in place. It was leaking all the drug down the back of Becki and wasnt going in her body AT ALL!

With the ephidural not working properly (for what ever reason) Becki was put on a high dose of Codiene. Because of the intense pain she was in, it was important to administer the pain relief EXACTLY on time. With severe pain you have to start with a high dose of pain reilef given ON TIME at regular intervals. When the pain has been controlled then the dose can be reduced and  the time of the pain relief given, is not so critical. However, if pain relief is not given on time when the pain is intense, it is MUCH harder to get under control and takes much longer. This is bad enough for anyone but for young children it makes it unbareable. In ONE day Becki had her Codiene 3 times that were between 40-50 minutes late. I ended up argueing with a consultant about it. He said it wouldnt happen again.......It did. It happened too many times that i ended up checking Beckis' notes on the bottom of her bed. It had a chart where all the drugs were being took and the times they were given. I checked the chart with the record i had kept and they were DIFFERENT.The official chart showed codiene and other drugs been given on time when in reality they were being given at totally DIFFERENT times. I showed my wife and several other people. Again other parentst were aware of the same sort of problem! A few days later and these charts and notes were not left out for us parents to see anymore!

SIX different times i asked for a photo of the tumour that was removed from our daughter. Still TO THIS DATE i have received NOTHING!

JULY 2007- HIGH DOSE CHEMO- This is the most intense and critical part of all the treatment. The amounts if toxic chemicals given at this stage can and DO KILL. Previous to this stage stem cells are taken and then replaced (at this stage). This is because the chemo is so strong it KILLS EVERYTHING. If the stem cells were not replaced at this point there would be nothing  left except a body that can not regenerate itself. The pain is so bad at this stage that MASSIVE amounts of morphine are used. So much so that they experience days and quite often weeks, having mass halucinations and not knowing where they are. They lose ALL bodily functions and so have to have cathaters. All this and nurses were STILL coming in with NO gloves!

Becki had been on morphine for several days now after high dose. I knew she didnt need it anymore and so wanted her off it.Taking anyone off morphine is serious stuff but i knew, that along with the codiene she was taking, there would be enough of a backround in her body to take it. Without the codiene there was no way i would have even thought about stopping the morphine so quickly. It probably would have sent her body into shock. The morphine was really getting a grip of Becki now. The hallucinations were now getting scary for her and she barely knew who my wife and i were anymore. I mentioned this to a registrar who said, as bad as it was there was NO way that she could stop now, it had to be done over several days. No way i thought, there would be nothing left of our daughter by then. I mentioned the codiene in the backgroud would enable her to do it this way. He told me it wouldnt. I knew i was right and so argued my point.....for over an hour. By this time our consultant had got involved and several other people. There was no way i was backing down even though they were trying to tell me i was wrong. They kept telling me that if we stopped it now it would DEFINATELY cause Becki to suffer. B******S, i thought, Becki was trying to let us know that it was too much for her and she wanted it to stop. Most of the ward had by now heard what was going on and knew that i wasn't a "happy boy". I made it clear that i wouldnt let it continue, one way or another, but was still told it couldnt be done. This went on for most of the afternoon and evening. When the morning came surprisingly enough the morphine was STOPPED. But i thought "this couldnt be done" without any DEFINATE adverse reactions.
Sure enough, with the codiene, everything was FINE. What do i know , Becki is only OUR daughter!

Through Beckis' high dose she was kept in isolation for her own protection. This was BARRIER nursing. There were at least 2 nurses who came in on SEVERAL occasions with NO APRON OR GLOVES. I couldnt believe what i was seeing. Our daughter with NO immune system at all, fighting for her life after HIGH DOSE CHEMO, and nurses still breaking the rules!

After her highdose Becki had to have a cathater that was removed shortly afterwards. The tape which was left on wouldnt come off. Even the nurses couldnt remove it so we asked if it could be removed the next time she had a biopsy as she would be  asleep. It was removed, but along with it a 5" square piece of skin. No care had been taken and it had been "ripped" straight off! We showed it to nurses and even our consultant, everyone who looked at it said how bad it was. Still didnt stop it from happening though.....





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