Neurosurgery Nightmare

[JulesRamone]

Hi, I hope someone can help. I've had a TERRIBLE time, and it involves malicious behaviour by NHS staff, and has left me with some permanent damage and quite a tricky situation with regard to my relations with the bloody hospital concerned. It was a complete nightmare, which may not be over quite yet--I was finally discharged as an outpatient a couple of days ago. I really, really hope someone out there can help. At least if I write this, I'll get it off my chest.

 

I'm posting this three years after I had brain surgery, which was a complete success--it was a low grade tumour and surgery was 'straightforward' and went fine. Brain tumours can be very bad, this was benign and the whole thing should have been over and done with with a three week stay in hospital.

 

Unfortunately a whole series of minor things went wrong, misunderstandings and misjudgments by various people, which lead to my RECOVERY, ie not the operation itself, being deliberately screwed up by a very nasty night nurse. Even as I'm writing this, I still can't quite believe it all happened. The whole thing should have been routine, all the doctors and nurses and the surgeon were really positive about the whole thing.

 

I can't go into what happened, it's really not nice at all, but through this nurse's handiwork I suffered terribly, and permanent damage which has screwed up my health so that I can't really work full-time and my career has got nowhere--I'm 38. When I made complaints without giving full details of what had happened I was told I was suffereing after-effects of the surgery, and that nothing had happened. It was an Orwellian nightmare. I couldn't identify the nurse because I was still in hospital (not a safe place, I had by then realised) and really just wanted to get as far away as possible from all of it.

 

That was 2003, and once I left I suffered some slight mental health problems (serious sleep problems, and chronic fatigue--all totally unnecessary). I was absolutely furious with the whole situation, as I'd also lost vision in my left eye into the bargain (I told you it was bad!) and now am not allowed to drive.

 

The rest of this story encompasses my dealing with the psychiatry department of the hospital and having to put up a continuous front that I now 'realised' that I had merely been suffering from after-effects of surgery and had not actually had any bad experience--even though they were sure it had 'felt real' (I got sick of that line). Only a couple of consultants realised I was telling the truth and they weren't about to support me as it was a screw-up by the hospital (if you can call deliberate sabotage of someone's recovery a 'screw-up') and it was far preferable to let me take the crap (humiliation and misery, pain) rather than do the unthinkable--allow the hospital to come into any blame whatsoever.

 

After over a dozen appointments I was discharged in early 2006, even in the last appointment still maintaining their version of the story to keep them happy and persuade them I had 'recovered'. I also had to see the tumour specialist for a couple of check-ups and I was finally discharged after my third annual appointment in May 07, a few days ago. However I'm fairly sure that he realised my intention was to complain about or sue his miserable hospital (I can't sue, it's over the 12 month time limit, but I definitely want to complain somehow). And I am worried that my notes are now going to get 'modified' and not in a flattering way. I have heard and read stories about how badly records and notes can get screwed about with or lost to confound a patient's attempts to make a complaint or even find out exactly what the records say.

 

I am so sick to death of this situation, and want 'closure' on it. I am appalled that a hospital can get away with messing up a patient's recovery, permanently damaging health, then arm-twisting the patient by using intimidation over their supposed mental health condition, and to add to it all, now the possibility of cooking up my records entirely in their interests, ie supporting their version that my mental health is suspect and any complaint I might make would merely be evidence of that. Of course, I don't know that they will get creative with the notes, but my sweet heaven, they've done exactly what they wanted up to this point, so I'm fairly sure they wouldn't hesitate if they thought it necessary to skewer a complaint. Up to this point I've had many appointments where the doctor concerned said he'd write to my GP and send me a copy of the letter, which of course I never got. It is a catalogue of abuse, and I've little idea what I can do. There is the Patient's Association... well, I don't know if that's a good plan. I've thought about writing to newspapers, my mp, or going to a solicitor. I already called a solicitor and they were sympathetic but said they couldn't help as I didn't have ANY evidence for my story. I don;t have copies of my notes or scans, they said, so I'm stuffed. Given what I've heard about records going missing mysteriously or denied to the patient (victim), I'm almost certain I won't get them intact. Anyway, I've gone spare trying to guess what to do about this.

 

I haven't included the catalogue of unnecessary permanent health problems I now suffer from, and I've not got a penny's compensation for. Meantime, I haven't been able to work, and my quality of life has taken a huge hit--all at the age of 35 when it happened, when I was full of life and all that stuff that now seems like someone's else's life.

 

The whole thing is ridiculous because all (well, the vast majority of) the staff I met were really very good. Even the psychiatrists I saw didn't actually realise that I was telling the truth--they were very kind in fact and I felt so sorry that they were mopping up the mess created by other staff distant in the organisation and that they had been deliberately misled by their seniors as to the credibility of my story). I've never in my life had any complaint about the NHS--I always thought NHS cock-ups were rare or happened to other people. Well I'm very angry. VERY angry. Incensed. Many people who have experienced things like this want to publicise it because they don't want anything like it to happen to anyone else. But there is the main problem which is I want to see my records, but feel that as soon as I apply for them they'll disappear--I can think of three consultants there who by now know I'm telling the truth, and they won't stand by and watch me be rude about their precious little hospital. Is there any organisation which can help. I have a few friends Ive told the full story to and they are horrified. Nobody I've spoken to knows what I might do, and the usual advice is to 'move on'.

 

I would be very grateful for absolutely any advice.

 

JulesR

[poppynurse]

I'm sorry you have had a bad time but I don't understand how one nurse could cause so much damage - can you elaborate?

In respect of your notes- you are entitled to request to go and look at them or have a copy for a small fee - why not ask? Then at least you might have some evidence to back up your claims.

And I think the time limit for personal injury is three years not 12 months, so you need to get a move on.

[JulesRamone]

Hi Poppy,

thanks for your reply.

 

You'll probably be a bit shocked at the answer to your first question. And I can't really go into the whole thing. I can assure you, they certainly can... through the misapplication of drugs. It really is fairly horrible what that single individual did when there was no supervision, knowing he would get away with it. Actually I don't think he realised the serious implications of what he was doing when he did it--I think he wanted to cause discomfort rather than serious damage. The whole story involves some personality clashes along the way which led to unprofessional behaviour by more than one staff. It really is a long story.

 

I think I have missed the three year deadline, but actually that wouldn't discourage me. I want to publicise this, the main thing that happened is that the NHS took a situation which was 100% treatable and instead through misunderstandings, some inexperience on the part of several practitioners and, most of all, the sheer malice of one very experienced night nurse, they took a fit active sociable 35yo and turned him into a half-wreck... it seems very wrong. Not what I paid my taxes for when I was working.

 

In order to get copies of the notes, I do know that you can pay a fee and get copies. I didn't know you are allowed to view them. I just want copies basically. I should just apply. I spose the thing is I don't know what pressure they can bring to bear on me... I feel that they probably would. But you're right, I should probably try. I just have this sinking feeling that they are very likely to mess around with the notes and maybe misplace them. The long and short of it is that it really is quite amazing just how cynical they can be.

 

Thanks for your advice. I really should make up my mind what my next move is going to be in terms of getting access to my notes. Thing is the appointment I had with the oncology consultant was a few days ago and he said he'd be writing to my GP and send me a copy. On past form it's no certainty I will get my promised copy--it doesn't give me much confidence. Of course I could just ask for my GP notes, and I should do that first.

 

It's quite complex, and feels like a load of litigation, rather than a medical problem. The joke is I do have medical problems, though not severe and I can't talk to the GP about them, because I don't want to be referred back to the original hospital--which I have the same feelings about as an innocent ex-inmate might feel about Guantanamo Bay.

 

All in all, I really would like to talk to some group who have practice dealing with cases where there has been serious negligence/malice so that I know I have some back-up. Honestly: they bloody frighten me. BELIEVE me, when there is a mental health dimension it complicates things. My mental health is not bad--sleep problems aside. Sorry, I really am fuming. They don't even send me the letters they send to the GP.

 

By the way, I did meet some wonderful staff along the way, and my real anger is against the system itself which often doesn't give staff and patients the best chance of getting the patient the best result.

 

JulesR

[CAGisforME]

Your situation is obvioiusly complicated, but I can totally sympathise with you, having suffered personal injury and then, during the case I brough against the organisation involved, being accused of it all "being in my head" etc etc, and the insinuation that the depression caused by THEIR behavour and actions was actually there in the first place and was over exagerated by me.

 

All I can offer to help is this:

 

Personal Injury cases have to be brought within 3 years.

 

The Patient Advisory Liaison Service (PALS) are great and, whilst I am sure you may have a distrust for these guys, they really helped me and suprised both me and my solicitor in their willingness to get to the bottom of things for me and ensure I was getting the best health-care available.

 

If you are in a Union, then look to them to help you. If you are not then you may need to get an appointment with a solicitor and summarise the problem, and get a full legal opinion.

 

I do wish you well.

[JulesRamone]

Thanks CAGIFM,

 

It's a ready-made excuse they have and they use it, and of course it's a perfect non-deniable since further protest just adds to their case--very difficult to win.

 

Thanks for your points. Unfortunately the incident was November 2003, and so I'm out of time, unless I can claim that my recovery took so long because of their behaviour, and so on.

 

You're right, I'm not that keen to get in touch with PALS. I think either I'm make a complaint or sueing, and I'm sure you're right they can help with either. But, I've actually now got something of a aversion/fear of the hospital itself. Also, the oncologist I saw a few days ago, who discharged me said pointedly that if ever I was to have any 'neurological' questions in future to make sure I came to that particular hospital. I think there is a rivalry between hospitals, and 'corporate loyalty' does not extend between hospitals--they are all independent. Anyway, my point: I think they are very keen to keep the whole matter in-house, rather than have another hospital scrutinise their dismal handling of my stay in hospital. Perhaps I should have asked to be transfered to another Trust and then asked for my notes. I think I may have mishandled the whole thing--which is my fault of course.

 

Solicitors would be a great plan, but I don't think they will be interested in such a complicated case which is out of time, I don't have any evidence at all and they would be unlikely to get a fee. That's why I was kindof hoping their might be an organisation which specifically handles cases like this to advise what to do. I suppose that is the function of PALS, in a way. As I am definitely out of time to claim, then I could simply make a complaint or at least go through a certain amount of hassle to put the record straight.

 

Thank you very much for your comments. The encouragement about PALS is very welcome. Generally people are a lot more helpful when there was negligence involved, but when it was malicious damage the whole thing is very sour, and understandably people think it's a can of worms. Also, I am a member of a union, and they have free legal advice. Only thing is, all legal people will probably say the three years thing is a sticking point. I think I will get in touch with them though, they've helped me before.

 

Cheers,

JulesR

[CAGisforME]

Jules - whilst the 3 years might be a sticking point, it could be argued that their consequential treatment of you exascerbated your condition, so I wouldn't let yourself be put off at the first hurdle.

 

Hopefully your union can get you a legal referral (that's what mine did) and, despite some of the incidences of Personal Injury (there were several) being more than 3 years ago my solicitors agrued (succesfully) that by not ensuring that the risk had been assessed and reduced as much as possible the organisation involved WERE liable for my personal injuries over that period.

 

I do wish you luck. Please let us know how you get on.

 

[poppynurse]

If you are alleging that a nurse acted maliciously and caused you damage then it is perhaps a matter for the police as well as the trust board and the NMC?

[JulesRamone]

I need my notes to do anything and I'm fairly sure the hospital will act very much against anything being disclosed. I don't know until I try, but once I do apply for my notes then that will spark off the whole thing and I know it will be a huge amount of hassle one way or another, so partly I am demuring as I'm uncertain exactly what will happen.

 

I will do exactly what you suggest as soon as I get my notes.

 

JulesR

[catw75]

JulesR, sorry to hear that you have had such a bad time, please consider contacting ICAS: they help with complaints about the NHS and can support and advise you (for free), hope they can help you.

[emmaf01]

Hi Jules- it is truly awful what you have been through. And by questioning your mental health, the hospital is using the oldest(and nastiest) trick in the book.

 

You could request copies of your notes saying that after everything you have been through you are just trying to get a greater "understanding" of what you have been through?

 

PALS do seem to be good, and from a patients point of view. They could be good about getting your records (using the above method). The Parlimentary and Health Service Ombudsman might also be a place to look.

 

I have had to take on the NHS, and I won. It can be done, given the right help- be it solicitor or support group. The best thing is to get as much info as possible before letting them know why you want it.