Oxygen Therapy 16 hours a day!

[czarziebar]

I am now disabled following a major operation in 2006. During the period leading up the operation I was misdiagnosed with a medical condition which resulted in the real problem not being addressed. In the months that followed my health deteriorated rapidly until the real cause of my health problems was diagnosed after admittance to A & E. An operation was necessary but I had to wait 6 weeks for my operation, it was not considered urgent - it was. I have a list of complaints over events that have ultimately resulted in my current medical condition. I am facing an uncertain future because I will now require increasing medical care and undoubtedly will have a shorter life now. I am 38. What can I do - I want justice?

[poppynurse]

To prove negligence you need to establish 1. a duty of care, 2. you then have to prove that an act or omission took place that no reasonable practitioner would have committed/omitted, 3. then that the harm was a direct result of the act/ommission.

 

I am not defending the NHS here as I am not a medicolegal expert and am not fully aware of the facts, I just thought it might be helpful to explain how things work. A medical negligence case is always hard to prove on part 2. This can takes years and much grief to resolve.

 

Your first step is to complain in writing to the trust and also request a copy of your records.

 

If you feel able to give more information on your medical condition and the events that you are complaining about we may be able to offer explanations for things you perhaps don't understand or further advise.

[czarziebar]

Thanks for your reply poppynurse. My story is rather a long drawn out so I'll try to be as brief but there's a lot of ground to cover.

 

Oct 05 I went to the drs because I was experiencing constant pain and distention in my abdomen, as well as breathing difficulties. A doctor (dr 1) examined me, prodding and feeling my abdomen and diagnosed me with IBS, although she sent me for an xray too to check my breathing. After a short time my usual dr (dr 2) rang to tell me my xray was clear - I told him that I was not convinced I had IBS because I did not have any of the symptoms other than distention, and queried my breathing problems too. He asked me whether I had had any other investigations, I said no, and he told me to make an appointment to see him. It is also important to point out that sometime earlier I had seen dr 1 to discuss fertility problems.

 

I decided to give the medication for the IBS a chance and experimented with my diet to see if this helped - it didn't. It was becoming apparent that the change in diet wasn't working but before I made another appointment to see my dr (dr 2) I was taken to A & E, unable to pee. After about 5 preganancy tests, xrays and a ct scan I was diagnosed with a ovarian dermoid cyst - 22cms across - the size of a rugby ball - I looked about 7 months pregnant.

 

What I have just described is the first episode of my nightmare. At this point I should say that I have Scoliosis and I had been advised about the difficulties of undergoing an anaesthetic. Despite my increasing breathing difficulties, due to the size of the cyst, my operation was not deemed urgent and I had to wait 6 weeks. During this time my breathing deteriorated and I had to undergo lung function tests and an echocardiagram. I also had to contact Pals in order to force the consultant who was going to do the surgery to see me because, apart from the initial diagnosis I had not spoken to him.

 

I also met with the anaethetist, who was going to be present at my operation and she agreed with me that I should not have an epidural - due to my scoliosis - she had experience of working with individuals with scoliosis. On the day of the operation the anaethetist I had met was away and I met another. I was bullied into having an epidural - I was told that if I didn't agree I would not be able to have the operation - and my health was in a terrible state by then, so I had no choice but to agree. The epidural did not work, so I had to have a general anaesthetic, as planned anyway.

 

After the operation, which was a success I was taken to intensive care (pre planned) and appeared to be recovering well. 2 days in I took a dive and suffered heart, lung and kidney failure - at first no one knew why - and after desperate measures and an emergency ct scan they discovered they had been overloading me with fluids. I slowly recovered and eventually was transferred to a ward where I remained for 3 weeks until I was discharged.

 

I seemed to be recovering well at my parents home and was reducing my different medication when I became unwell. I was taken to their local hospital where I was diagnosed with Type II Respiratory Failure. I spent a month in a high medical dependency unit, where I had to use non invasive ventilation, which I still require today, along with oxygen therapy when exerting myself. All the time I was in the high medical dependency unit the consultants requested my notes (from the hospital that completed the surgery) but it would not send them so they were working in the dark.

 

Well that is the general outline - sorry it is a bit of a story - and there are a few other details but I'll stop typing now before I develop RSI. On a final note before I started to feel unwell, when I first visited dr 1, I was very fit and able. Despite my scoliosis I had led a completely normal and active life, walking with my partner and our dog for at least two miles a day. I can't even get to the end of my garden now with going blue.

 

I'll look forward to hearing your comments.

[poppynurse]

Bless you what a nightmare to go through.

 

How long was it between going to the GP and ending up in A&E? And how severe is your scoliosis?

 

I can see that 6 weeks felt a long time to you awaiting surgery but I suspect that the doctors needed the lung function tests and echo before they could anaesthetise you (they need as much info as poss so they know exactly what they are dealing with, as scoliosis can affect heart and lung function). In terms of ITU, it is not uncommon to suffer some degree of organ failure after major surgery - the question is was the care negligent?

 

Has anyone explained why you developed type 2 resp failure?

 

You really need specialist legal advice on whether you have a case for negligence. There's no doubt that you are having a terrible time but the case will probably hinge on how much of your current medical condition is down to the scoliosis. Sorry I can't be more helpful.

[czarziebar]

Hi Poppynurse!

 

Thank you for your useful comments and advice. In answer to your questions; I believe it was about 4 months between first seeing dr 1 who diagnosed me with IBS and my admission into A & E.

 

My scoliosis is quite severe, in as much as I have a double curvature, but as I said before, up until the point just before I consulted the dr I have led a completely normal and active life. I have done everything I've wanted to - walked up mountains, swam, abseiled, walked my dog for miles and miles. I was never going to be as tough as some but I was very capable and well. I find it very difficult to accept, as I am being told to do, that I can go from that level of fitness to my current condition purely as a result of my Scoliosis. No 'normal' person would expect to accept the circumstances that I find myself in as a result of medical treatment - just because I have Scoliosis I do not think it is right for people to use that as an explanation or excuse to hide behind. I understand that people with Scoliosis do suffer with respiratory difficulties as they get older - but that is progressive thing and does not go overnight from being fit and able to being disabled with respiratory failure.

 

 

It has not really been made clear to me why I developed Type II Respiratory Failure. To be honest I have many, many unanswered questions.

 

I'm sorry if I seem a little angry, in many respects I am grateful to a great many of the people who cared for me but I am going to have face the rest of my life (however long that is now) like this and struggling financially too because I am no longer capable of earning a decent living.

 

I will seek specialist advice - I'm not sure where to start. Hopefully someone will be able to advise me. :-|

[poppynurse]

Are you under a specialist for your scoliosis? Has it been suggested that the respiratory failure is due to this (it is possible). It might be worth writing to him/her asking for an appointment to discuss your concerns and prognosis. You could also express your concerns in writing to the complaints manager at the hospital trust to see if you can get a clearer picture of what happened. And you are entitled to request a copy of your notes which might help clarify things. I would suggest doing this before instructing a solicitor as the trust will then be reluctant to talk to you.

 

I'm sorry I can't be more helpful.