Is this medical negligence

[AShadowLurkingInTheShadows]

Long term poster, NC as it's quite outing but didn't quite know where to put it! Sorry if this is long trying to squeeze a lot into short as possible post!

I have quite a rare disease where basically the CSF around my brain sometimes just builds up and doesn't drain properly. It can result in extreme pain (think your brain being squashed by a vice), blindness, needing surgery ect.

Earlier this year I felt the symptoms build up and visited my GP. She didn't want to deal with it and wanted me to wait two days which in itself is ridiculous considering what happened and how quick it all came about (I was fine on the Monday, in hospital on the Wednesday) In the end I went to A&E, where I spent all day and was admitted. The next day the moved me to ambulatory care where they continuously forgot to give me medicine, sick bowls, pain relief and generally treat me. I saw a neurologist who wanted a LP done and a eye test done as a matter of urgency. Now due to previous experience's LP's where extremely traumatic and had to be done under general instead of local.

They eye test was never done because they forgot! Keeping in mind I could go blind and was in extreme pain. I had to fight to be kept in the hospital as they wanted to just discharge me, they told me to take my own cannula out and go home, (I took my cannula out as I was told and blood went everywhere! despite no treatment, I asked to speak to a manager and I even had the manager tell me "you're not worth the ambulance!" when I asked to be transferred to the neurological hospital in the next town. He belittled me, refused to treat me and told me he would ensure nobody would ever touch me if I carried on. So much so I had a panic attack whilst he stood there and stared at me and called me a drama queen. I ended up refusing to leave so they had me transferred to a different department as they wanted to close.

From there it got worse, they lost my medication every day. They even let it run out and me go without, they didn't administer pain relief because they forgot, they didn't do the eye test to days later to which point I couldn't' even read the first letter on an eye chart!

They transferred me to three different places within an hour as they didn't know where to put me (in the end they settled with the dementia ward as that's where I was most suited) When I got there due to not being able to stand light or sound (all part of the condition) they then put me in a cupboard. No lock on the outside but one on the inside, no bed just a little window. I had to call the matron from my phone whilst lying on the floor to try and get it sorted. I didn't eat or drink for a week at no point was I given fluids for being dehydrated (which I was) I was there over about 10 days and only on the 8/9th day I had the LP I desperately needed pressure was sky high and in the end I needed brain surgery and have had to have a permanent device implanted in my head to ensure it doesn't happen again and I had to be transferred hospitals (the one I asked to go to on day 1).

I put in a complaint but nearly 3 months later it is still delayed. DP thinks they're trying to cover there tracks because they were negligence and I'm being U for not seeing someone about it. However I'm not even sure if it falls under that! so aIbu by thinking it's not and extremely naïve or is he in thinking it is?

[fabulousathome]

Try PALS

www.nhs.uk/chq/pages/1082.aspx?CategoryID=68

[AShadowLurkingInTheShadows]

I already have, they're helping with the complaint which has been delayed 3 times in nearly as many months

[Stiddleficks]

Personally I'd be on to a solicitors. I agree with your partner they are trying to cover their tracks and hoping the longer they leave you that you'll just go away. Think how you would feel if your partner went through that, would you think it was negligent then?

[Trojanhorsebox]

Medical negligence is a specialized legal area and you should talk to a solicitor in that field if you think you have grounds for a case.

I am not a lawyer but do work in health care. My understanding is that you have to have sustained damage and that damage must be a consequence of substandard care if you are to claim negligence. Lots of people suffer damage as a consequence of their disease itself or as a side effect or recognized complication of treatment - proving the damage is directly due to poor care is where the difficulty lies I believe.

I found your OP confusing. Clearly you are dissatisfied with the care you received and that may or may not be the basis for a separate complaint. Did you make a full recovery or did you suffer permanent damage? You don't need to answer here, but that is the question at the heart of a negligence case as far as I understand it. If your complaint is that you needed surgery and a device - I assume a shunt - implanted, then was that due to delayed or inadequate care or was that a natural progression of your disease process? There will likely be lawyers on here who can explain things more clearly.

[PortiaCastis]

Why on earth did .you take the canula out?

[AShadowLurkingInTheShadows]

Thank you both

If it was my partner I'd feel terrible and would most likely say it was negligent there is no excuse as he say's to not give pain relief, medication and put you in a cupboard.

Trojan Yes I did need a shunt, a VP one due to the inadequate and long delay in care, the longer it was left the more damage it does as a result I now need glasses to see, my eyesight won't ever go back to what it was, I do still get pain and even talking about it causes a bit of anxiety and obviously I'm going to have a device in my skull for the rest of my life at only 22/23 (was in there for my 23rd birthday).

[Rawhh]

I didnt want to read and run. I have what I'm assuming is the same condition. Every emergency interaction with the NHS I have is at best like you described but has been a lot worse. I have tried a number of times for medical negligence and failed primarily as the condition is so unusual with confliciting advice it is easy for the defeding trust to wriggle out. PALS have always been in helpful and the formal complaints process always 'our medics acted as best they could with the knowledge they had at the time'.

[AShadowLurkingInTheShadows]

portia because the dr told me to take it out myself, it was easy and go home. I was on my own, scared and had no idea what to do. I just did what they told me to do!

[PortiaCastis]

Oh ok

[Crasterwaves]

you could seek help from the charity AVMA who can refer you to a solicitor:

www.avma.org.uk

[Rawhh]

Posted too early...

Unfortunately, a VP shunt and deteroriated eyesight due to optic nerve damage is common amongst women with IIH. Any medical negligence case would need to prove that yours is down to the hospitals negligence alone which would be nearly impossible.

[PolitelyDisagree]

Was your DP with you when you were in hospital to witness what happened.

It sounds awful.

[AShadowLurkingInTheShadows]

Yeah he was on some days, Even my sister was in contact numerous times a day to people at the hospital who promised time and time again that they'd sort it and they never did, we did talk about it a lot over message and I do still have them.

[Trojanhorsebox]

If it was my partner I'd feel terrible and would most likely say it was negligent there is no excuse as he say's to not give pain relief, medication and put you in a cupboard.

As I said, negligence has a precise legal definition. Poor care, unsympathetic attitudes from staff, delays in receiving medication etc while clearly being less than ideal, do not necessarily constitute negligence. That doesn't mean you can't make other fully justified complaints of course, but you need legal advice as to whether it's negligence.

Yes I did need a shunt, a VP one due to the inadequate and long delay in care

is that your opinion or is that the opinion of an independent medical expert ? That's what you'll need for a negligence case and a solicitor specializing in negligence will have a list of specialist experts they use. They will probably examine you and your records and give an opinion. I'm not an expert in this field, but the hospital may well say you would have needed a shunt anyway as a consequence of your condition, so your legal team would need to show you needed the shunt because of the inadequate and delayed care, as you say, or due to other reasons.

I am not trying to be antagonistic, just trying to help you think about the issues before embarking on a stressful legal process, and reinforcing the need for expert legal advice.

[Rawhh]

Trojan is spot on.

Ive lived with this condition a very very long time. After every hospital visit I was angry and anxious because I was never treated appropriately, my concerns were dismissed and it was only at crisis point I recieved the treatment I needed. I wpuld then invest time and energy complaining and getting furious when they dismissed them.

I now go in expecting the worse write down whats wrong with me to show them and wait it out.

Its not ideal but is what happens when you are dealing with a very rare condition and an under funded NHS.

[AShadowLurkingInTheShadows]

I know you not :)

Delays where days not just hours I wouldn't of minded hours just so much it was all just a complete and utter shambles.

That was the opinion of the surgeon who performed and other doctor in a totally different hospital.

I'll think about it and maybe look into speaking to someone

[AShadowLurkingInTheShadows]

I've only had it since my 19th birthday apparently this appears around my birthday time. I've been treated for it twice/three times before never has it ever been like this. Normally if I feel it's going up I ring the NS he books me in, go for a LP and I'm home. I know many people are a lot worse I seem to be on the very low end of how bad it can get

[Rawhh]

Are you in the UK? I find my issues happen due to referal times when I come out of remission. The hospital sign me off to reduce their lists ehen I show the slightest bit of remission knowing Ill be back in a few months.

Were you medicated or just having therapeutic LPs?

[AShadowLurkingInTheShadows]

Yes I'm in the UK, SE.

I wasn't on anything because it's very infrequent (was on Diamox in 2013 off them months later) had a LP Dec 2015 was fine and on nothing. Both times I've been seen and dealt with within 24 hours of contacting my neuro

[PolitelyDisagree]

Sounds like an truly horrible thing to have. I hadn't heard of it before.

[AShadowLurkingInTheShadows]

It's very rare, every 1 in a 100,00. Thank you Politely

[Rawhh]

It just shows how varied the treatment is area to area.

I hope your shunt offers more relief.

[AShadowLurkingInTheShadows]

I don't even think I really needed one tbh. It's not a continuous thing like most I mean I went 2 years without having anything.

[MatildaTheCat]

OP, you've clearly had a horrible time. I would focus on trying to ensure it doesn't happen again. Can you get your neuro to write a letter of instruction in case you need an emergency admission again? Or simply ensure that you are admitted directly to the neuro hospital?

I would write down a clear and conscience timeline with bullet points of your major grievances and send it to PALs but although they will investigate you will get a 'sorry you feel upset' sort of reply. If you ask for a plan of action to prevent further episodes like this it may be more productive.

Lastly, medical negligence. It's a massively complex issue and difficult to prove. You also need to prove both negligence and that you have suffered as a result and prove any losses. I am four years into a claim and I advise that unless you have been permanently injured just don't go there. It is stressful beyond belief and you are young.

Concentrate on getting well and getting your health sorted out. An apology would be nice if you can face the effort.

[Rawhh]

I know some trusts are quick to put a shunt in. Surely once the LP had lowered your pressure you were out of immediate danger and could have been managed with Diamox. However, if it keeps reoccuring like that perhaps a shunt would be a better long term management solution but something for you to consider carefully not be forced on you like it was.

Like Ive said the conflict in progression al opinions on managing the condition make negligence claims very likely to succeed which is awful for someone like yourself. Have you looked at councilling. Ive had some and its helped me come to terms with not juat living with this but the way I have been treated.