Advice / suggestions please.

[michelle73]

Hi all. Please feel free to add your comments thoughts on this. Here goes. My son (6yrs old) started suffering terrible ear infections in January 2006. Eventually he was referred by our GP to the ENT clinic at my local hospital. We were seen initially in August 2006. We attended and a hearing test was carried out. The consultant looked and didn't think there was much of a problem and we were just given ear drops and told to come back inthree months. According to the hearing test, my son's hearing in the left ear was slightly lower than it should have been but this was apparently due to the infection. We went back in September 2006 and had another review. Again we were told that there was nothing to worry about, given more drops and told to come back again in another three months. My son's ear was constantly leaking the most foul smelling pus I have ever come across. You trust what you are told and we did as instructed. In December 2006 we attended again and this time the specialist decided to do an examination under anaesthetic so he could have a good look. This was booked for December 27th 2006. We attended for this procedure and the anaesthetist came to see us prior to the operation and we discussed the consent form I had signed. He made it clear that the consent was only for the examination and if anything was discovered, we would have to bring him back. All was fine until Jamie returned from theatre. We asked one of the recovery nurses how it had gone was told that a grommet had been inserted. I wasn't overly concerned at this point. Jamie was discharged almost immediately. No doctor came to see us to explain what had been done nor was any aftercare discussed. We were given a leaflet and told the specialist wanted to see Jamie again in March 2007. Again we attended and by this time the grommet had actually fallen out. Again the doctor gave us drops, this time they were eye drops (?) when I questioned the doctor about this he said it was fine as it was all connected! Guess what, come back again in three months!! So off we went again. I would like to say at this point that no further hearing assessment had been carried out. June 2007, once again we went back and this time the doctor decided to do a swab of the ear. September 2007, guess what, the test results came back to say he had ear infection!!! More drops and a pat on the back, off we went again. Finally in October 2007, I had had enough, the discharge from my son's ear was that bad I couldn't bear to cuddle him. We weren't allowed to clean it, we could only wipe it when it dripped out. He couldn't go swimming or even shower. We had to completely cover his ear before bathing. We got referred to another hospital in December 2007. Within two weeks of attending for the first appointment at the second hospital, Jamie had had an exam under anaesthetic, two follow up appointments and a full hearing assessment. We now know what the problem is, what the treatment is and what the prognosis is. Unfortunately for Jamie, the condition is Cholesteatoma, he will have to undergo some pretty major surgery to clear it. It recurs so he will more than likely have to have lifelong follow up to make sure it hasn't returned. The main problem is is hearing. Currently he is 50% deaf in his left ear and when the surgery has been completed he will be completely deaf in the leaft ear and will have to have a hearing device fitted. The surgeon we are seeing now has explained that this condition can either be congenital (born with it) or it can be acquired through ear trauma caused by insertion of grommets and badly managed ear infections. The dosctor has confirmed that it is not congenital as it would have been up through health visitor and GP checks. My sonn is going to have a permanent disability through no fault of ours. I have started the NHS complaints procedure and have had their first response back which I refuted and I now have a meeting scheduled for Tuesday 12th February at the Trust. I don't want money I just want them to acknowledge that they got it wrong. Am I asking for the stars? Any feedback would be appreciated.

[ScarletPimpernel]

Unless you can show conclusively that the doctor treating your son initially made specific errors that led to a wrong diagnosis and incorrect treatment, I suspect it will be difficult to get either the doctor or the Trust to admit that they got it wrong. It could be that the doctor thought that in his clinical judgement he was doing was the right thing at the time - many signs and symptoms can point to a number of conditions - do the records show that he considered the differential diagnoses? They are probably being defensive because you are effectively asking them to admit negligence.

Turning to the consent form, this should be straightforward. Nowadays consent forms are very detailed, and the clinician who gains the consent must explain it carefully and signs to confirm that he has gone over what is being consented to, any side effects and any potential complications. Signing it is an informed decision, and unless it states that the consent is for EUA only, it will be difficult to contest.

[michelle73]

Hi there, the consent was for EUA only. I clarified this with the anaesthetist prior to the EUA. What a mess. The doctor has stated that they feel they would have come to the same conclusion if we had carried on attending with him. My point is that in four weeks at a different hospital we are in possession of all the facts, he has had a CT scan, an EUA and four follow up apopintments. We attended the other hospital for 18 months. Surely they could have diagnosed it sooner?

[ScarletPimpernel]

The consent form issue does seem clear; carrying out a procedure which has not been consented to is a serious matter, particularly when the situation is neither serious (in the sense of not being life-threatening), or an emergency. You may find this information of interest.

The issue of whether the first doctor would have come to the same conclusion as the second, but would have taken longer to do so, could be argued as differences in individual practice and clinical judgement. Of course, the second doctor would also have had the notes from the earlier consultations, and the child was not presenting in exactly the same condition, having already undergone some investigation and treatment, so a direct comparison may be unfair. These things are usually far from simple.

[michelle73]

Quick update. We have had 'a local resolution meeting' yesterday. The Consultant shook and shivered all the way through it. No result as yet. Will keep you posted...

[poppynurse]

I hope you have copies of all your childs notes? If not you need to get these asap.

[please return my money]

Michelle

You are not going to like what I write but I hope in the long term it will help.

I am 25% deaf and I appreciate that you want retaliation, I know I did. But the most important thing of all is that your family and your son accept his 75% hearing loss and work together to make his future as fantastic as possible!!!!!! Please try and believe it is easier for him to adapt at such a young age, I know being far older I found it very hard.

Adults currently earn an average of £30,000 to 35,000 using sign language to translate - so this may be a possible future career for your son and in fact for your family too this may be a future career opportunity as there is a shortage of sign language and lip reading translators.

Seize every opportunity and force your council to act now whilst he is still young. Get every bit of extra help you can.

You have two fights on your hand. The fight to make his life as easy as possible and the fight for compensation.

The most difficult part as an adult is not showing how distressing it is to you and trying to be as normal as possible, when what is "normal" has been changed through no family fault.

I know my words may seem harsh but I hope that in the long term they help you.

My thoughts and feelings are with you xxxxxx

[michelle73]

Originally Posted by please return my money

Michelle

You are not going to like what I write but I hope in the long term it will help.

I am 25% deaf and I appreciate that you want retaliation, I know I did. But the most important thing of all is that your family and your son accept his 75% hearing loss and work together to make his future as fantastic as possible!!!!!! Please try and believe it is easier for him to adapt at such a young age, I know being far older I found it very hard.

Adults currently earn an average of £30,000 to 35,000 using sign language to translate - so this may be a possible future career for your son and in fact for your family too this may be a future career opportunity as there is a shortage of sign language and lip reading translators.

Seize every opportunity and force your council to act now whilst he is still young. Get every bit of extra help you can.

You have two fights on your hand. The fight to make his life as easy as possible and the fight for compensation.

The most difficult part as an adult is not showing how distressing it is to you and trying to be as normal as possible, when what is "normal" has been changed through no family fault.

I know my words may seem harsh but I hope that in the long term they help you.

My thoughts and feelings are with you xxxxxx

Hi there, many thanks for your response. We don't want money from the trust. We want them to acknowledge that they got it wrong and apologise. Hopefully, start to put systems in place to ensure the standards improve.

[poppynurse]

Have you had a response from the trust yet?

[michelle73]

Originally Posted by poppynurse

Have you had a response from the trust yet?

We are waiting for a copy of the notes from the resolution meeting we had on 17th April. We will see what they say then. My son has had major surgery on his ear on the 21st April. All the bones in his left ear have been eaten away by the disease and they have excavated his mastoid. Apparently the disease was extremely bad, worse than the specialist first anticipated. He is recovering well and is quite proud of his zip behind his ear!

[michelle73]

Originally Posted by poppynurse

Have you had a response from the trust yet?

Quick update, we have a copy of the noted from our informal meeting with the trust in question. They have admitted that there have been problems with my sons care but they assure me that they will put measures in place to make sure that it doesn't affect anyone else. What should I do next?

[poppynurse]

What outcome do you want?

[michelle73]

Originally Posted by poppynurse

What outcome do you want?

Hi there, I don't know what I want. I am not happy with the way the way things were left. I don't feel the notes are a true reflection of what was discussed, but I don't know what to do next. I have never been involved with anything like this before. What can I do next?

[poppynurse]

What was the outcome of the meeting? How were things left? Can you scan a copy of the notes?

[michelle73]

Morning. In a nutshell, the response was we hope we have clarified your concerns, if not come back to us. I will scan the notes in later for you.

[michelle73]

Quick update. We have met with the hospital in question again and they have advised us that they don't feel that things went as well as they should have done and they may have made mistakes. Jamie has had another check up and his hearing is gradually fading. The trust have told me the ball is in my court now. Where next?

[poppynurse]

Specialist legal advice! Do you have legal cover with your house insurance or union?

Please don't go for a no win no fee as they may not be experts (but will say they are!).