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They didn't listen
Our main complaint with the doctors was that they didn't take any notice of anything we said. It was as though we didn't exist and were completely in denial. The diagnosis made by the neurologist was taken as
gosple by everyone else even though she said it was her 'Best Guess'. Anything Rob had wrong with him was attributed to Leigh's Disease and no matter if it was as simple as an Asthma attack it was put down to having a fit. In fact the diazepam he was prescribed for muscle spasms exacerbated his breathing problems and caused problems swallowing.
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| There was no thought to his diet or his constipation, this all fitted in with the 'Best Guess'. In fact
he nearly did die through lack of understanding. I cannot forgive the condesending attitude of some of the consultants and registrars when they wrote about us to other doctors. They also feel they have sole rights to practice medicine and rubbish anyone from outside the NHS. Even those within the NHS who don't tow the official line
are discredited. This holier than thou attitude has caused a lot of problems in Bristol hospitals and elsewhere. |
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A Skin Biopsy
The neurologist wanted Robert to have a skin biopsy and it was agreed he could have this just after the Cat scan as he would be sedated and this would
make it less stressful for him. The Cat scan was done at midday and we were back on the children's ward by 1:30pm. The junior doctor who was supposed to
be doing the procedure came into the ward so I asked her to hurry up and do the biopsy because Robert would be coming around from the sedation soon. She avoided me for the rest of the day
and I was very cross that this chance had been missed. |
| The next day the junior doctor came onto the ward and spoke with consultant and I then listened to her training on
how to do a skin biopsy! This lasted about 5 minutes and then it seemed she was ready to do the procedure on Rob. When I saw the neurologist I told her we didn't
want this procedure done as the chance to save Rob pain and stress had been missed. However she convinced us it was important to do this test to rule out some metabolic diseases, so eventually we agreed
to have it done but only by someone who had performed a skin biopsy before. It was denied that the junior doctor didn't know how to do the procedure and that the day before it was said that she couldn't do it
because she didn't know what medium to put the biopsy in. What a load of rubbish! Eventually it was done by a consultant who found it really difficult to do and to add to his problems a fire alarm
started ringing just above our heads and it continued for the whole time. |
| A chest XRay
About 10 months later I had to take Rob to casualty as he had developed very shallow breathing and needed a chest XRay. Unfortunately for me
the same doctor as mentioned above was on duty and she listened to Rob's breathing and sent to him to have an XRay. When we returned with the plates she took a quick look and then disappeared for 30 minutes leaving me to worry about the results. I wonder if she
enjoyed her revenge!
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Blood Tests
After I had contacted Biolab Medical Unit and found out about the blood samples needed, I rang the hospital to speak to the neurologist. In my nievity I assumed they would be delighted that someone else may be able to help but all I received was a negative response. They discredited Biolab
even though they had no idea who they were. |
| I eventually wrote a letter to both neurologists telling them I was bringing Robert into casualty to have the blood samples taken on Monday morning like it or not! The doctor who took the samples was very kind and took a lot of trouble to find out from Biolab what was required. However
after I posted the samples off myself, I received a concerned telephone call from Biolab to say that they had got the letter mentioning Robert but the samples were labelled Charles Walker! Fortunately I knew they were Rob's as they hadn't left my sight but I hadn't checked the hospital label put on them by the doctor. If these had been sent to an NHS
Lab then Charles Walker would have been put onto Magnesium & Zinc supplements! |