ICH and the NHS

[LifelongLandlady]

Hi all, I'm new to this today, so please be patient with me while I tell you my story.

In Oct 14 I had a seizure in my sleep, so, off to A&E blue lights flashing, I went. I felt very unwell and was in and out of consciousness but when hubby asked about a scan he was told it was too big a radiation risk. So, 4 hours later I was sent home having had no treatment, plenty of push me, pull me tests! but feeling no better, in fact worse. After being only semi-conscious for a following 31 hrs, my GP sent me back to A&E for a scan which showed I'd had an intercranial haemorrhage in the right lentiform nucleus. I was admitted while they decided whether to transfer me for surgery but as the bleed had stopped itself they decided not to operate. That left me with no treatment available but painkillers for the muscle cramps, pains in my left leg and arm and rotten headache. 15 days later I had another 'episode', that no-one can label, that has left me with worsened symptoms, now my short term and medium term memory is a real mess, I stutter, use a stick, have extreme exhaustion and have dystharia so struggle to communicate (hell for someone who has always talked for a living).

so now i'm jobless with no hope of return to my trade, struggling with my roles as mum and wife, and feeling like I'm lost....so please....

am I the only one to be angry with their lot?

has anyone else dealt with the NHS messing up?

any tips for re-inventing yourself?

[paxo05]

Sorry to here of what happened to you. Yes I think we all go through the anger and the world against us. If I'm honest it is still happening to me at times. It may sound hard but keep up a positive attitude when you can. It may be a long road to recovery but to some extent you will get there. If you want to rant and get anything off your chest this is the place. Idont think anyone will mind and you never know someone may be able to help. All the best.

[razyheath43]

It's sad to read of such shonky treatment! Get angry get sad,most importantly if all get as well as you can reach out for support and find yourself again xx

[angelite]

Hi,Landlady,

Sadly these days,the medical motto of 'first do no harm' to the patient seems to have been replaced by 'first cover your own backside' where protocol has not been followed or mistakes are made.I believe a lot of it is down to lack of funds-patients have to be put in priority and then again the priority patients have to be further shortlisted according to how busy and short of funding the hospitals are.Certainly when I was thrown out to outpatient psychology ( neuro symptoms 'all in my head' )my partner had heard the consultant in the nurses station'If they are not at death's door they have to go' .So I and probably many more from that A and E shift were discharged by a respiratory consultant who was left in charge of deciding the fate of various illnesses that she had no knowledge of.

So no,you are not the only angry one.Yes,mistakes,lack of beds and budget control interferes with the most appropriate treating of some patients from what I have seen.As for reinventing yourself,that is for you to explore and find what works for you.Please bear in mind that your injury is only 5 to 6 months old which is very early in the journey of recovery.If you are not already aware of it,here is a link to brain plasticity to explain the process of training/rewiring.en.wikipedia.org/wiki/Neuro...

Good to meet you,hope you find this forum helpful, Angela x

[Nutkin33]

Hiya. Welcome to the site. I had a TBI just over 2 years ago, and it is only in the last few months that I have really started to accept myself as a new, different person. Anger was always present, and I think my sister was lucky I managed to keep it under control.

I can't talk about my treatment, cos my accident was in South Africa, and I've only been here since six months after it happened. The brain injuries are very hard to treat, as our brains are so different, and a lot of the time, the problem can't be seen, we just feel it!

Good luck with your recovery, and feel free to write anything down here!

😀😉

[cat3]

I'm horrified to read your comments. It makes me appreciate, even more, the excellent treatment I received when I had my bleed 3 years ago.

I wonder if anyone was ever held to account for your shoddy treatment which almost certainly put your life at risk. I was told by my surgeon that time was precious during a haemorrhage and that swift action was what minimised after effects.

I was scanned at my local hospital then rushed to the specialist brain injury hospital several miles away for further scans and subsequent coiling and, over-all, my treatment was exemplary.

I'm appalled and saddened to know how you were treated. But it seems that most of us here have been left with issues such as short term memory, word recall, mobility, and a powerful sense of loss for the person we were before the injury.

I think the first rule we have all had to learn is to let the past go and accept who we are now. The second chance we're given after surviving brain injury comes with the certainty that we have a new life with new limitations and, when we learn to accept those differences, we have succeeded in re-inventing ourselves.

It's very early days for you ; less than 6 months, so there's every chance of seeing some improvements. Do you have any type of after-care such as physio or other therapies ?

Glad you've found us & welcome !

Cat xx

[LifelongLandlady]

Thanks to all you wonderful folk that replied to me, not so lonely now. Wow, isn't time a fluid thing when your head is holey! thought it was yesterday I wrote that post buts it's days ago.

I now have an appointment to have my memory tested and another neurologist visit so I can ask questions I need answered, so things are jogging on. Also found out, through my own research & FOI request, that the hospital broke their own protocols by not scanning me, so I'm very angry and sad

The hospital full inquiry is due on 24th April, so I guess I'll be off to the solicitors after. Having requested all my health records, I can see the errors A& E made but I'm pretty scared of the whole legal thing, don't feel strong enough but I can't do either of my former jobs so I have no choice but to get help from a solicitor.

My therapist says I'm grieving for the person I was and I guess she's right but it's so hard to move on when I know I face a legal battle on top of the ICH and the problems that brings.

Thanks for listening, kind souls.