Frightened & angry

[Fergie65]

In April of this year I went to a & e because of a really bad headache I told staff it was like fireworks going off in my head & I could feel something like water running down at the front of my head & at the back a & e sent me home with paracetamol & told me I had a migraine a couple of hours later at home my 9 year old witnessed me taking a seizure & was screaming for his daddy to help me my husband had to clear my throat so I didn't choke on my own vomit when taken back into a & e I was a 3 on Glasgow coma scale. Because I was non responsive there was a DNR put on my bed & my husband told they hadn't seen that much blood on someone's brain who was still alive . Every1 was told to prepare for worst, when I didn't die they decided to take me off meds that they'd given me to make me more comfortable to see if there was any reaction as neuro couldn't treat me in the condition i was in. Once meds wore off I removed breathing tube on my own & neuro took me & inserted coil in my brain. When I left intensive care & put into a ward twice not once did I go missing ftom ward once I was found wandering about a & e & 2nd time I was found by an off duty nurse @ 12pm at night wandering about a main road, the ward I was in didn't even realise I was missing until my husband called to say I'd been found I was then moved to specialist brain injury place graham Anderson house where I honestly can't praise the staff enough. I'd just like to say that I don't blame the staff in the wards I'd went missing from simply because there wasn't enough staff per patient the fault lies with health board. The icing on the cake was when my mum queried why I was dirty & hadn't been showered they'd said they asked me to shower & I'd said no my 70 year old mum had to shower me herself. My mum told ward sister the next time this happened she would be bringing Nicola sturgeon up to see me & see if her standard patient care was the same as the wards my mum never came back up to me being dirty again and do you what the worst thing about all of this is I'm an employee at the same hospital where all of this took place & i feel absolutely sick to my stomach at the thought of having to go back to work for an organisation that had total disregard for my life and welfare & for what they put my family through I've been referred to another Nhs treatment centre to help with my anxieties because I constantly think I'm going to drop dead & I can honestly say I'm not filled with confidence in having to deal with Nhs again either as a patient or employee gp had to put me on diazapan because I was getting myself into such a state everyday with crying etc my husband can't moving for me as I feel I constantly need him with me so I no I'll be ok it all feels so hopeless at times & all I want is to be me again

[Kirk5w7]

Hi Fergie, you have been through it haven't you, I'm so sorry, no-one should have to endure that kind of care.

My experience was much better luckily, but only because my family were there to ensure I got the care I deserved.

Because I was so bad they let the family come and go as they pleased until I was no longer in a coma and my family were convinced I was recovering .

It was a few weeks before I could say I was aware of what was going on round me but they had a team of healthcare assistants who came in daily to give bed baths to all those patients who couldn't bathe themselves. I got to dread the Afro- Caribbean ladies, they were so rough, and welcome the Asian ladies, they were far more gentle.

I couldn't bathe myself until I went to rehab, they were brilliant.

I'm glad you are finally getting to grips with your situation but acceptance does not come easily, it takes a lot of patience, I think I speak for everyone on here when I say we all want our old life back.

You will learn coping strategies and it is still early days, I'm sure you're sick of hearing that, I am over 2 years down the line now and still learning the best way to cope with some of my issues.

Well done with the recovery so far, be kind to yourself and try not to dwell on the past and look forward to building your future, you have had a second chance, don't waste it with bitterness and recriminations, that won't help your recovery.

A good book is "Brain rewiring for Survivors" it was bought for me when I left hospital by my son, he has it's sister book "Brain rewiring for Loved ones " ( I think that's what it's called) publications like these and this forum are invaluable, seek support where you can, and welcome this is a good place to find xxxx

Janet

[Fergie65]

Hi thanks 4 ur feedback it helps 2 no ur not alone my husband & family fought for everything 4 me but I despair for anyone that doesn't have that kind of support network in place to help them It shouldn't have 2 be this way but my husband made it absolutely clear he wasn't going anywhere until he got the answers he was looking 4 will update site & let u no how I get on x

[saralee21]

Hi Fergie, sorry to read that you have been through so much. I don't know if this helps, but I found a lot of comfort in the words of the interventional radiologist, who was standing over me when I was woken in HDU. He was part of the team when my coils where placed. He assured me that 'there is so much scaffolding up there that the risk of anything further happening was negligible' I have hung onto these words for the last 11 years now, and although there have been many other issues to deal with ie: a VP shunt placed two weeks later. I have never had any doubt that it would be OK.

Guess what I am trying to say is, If you can try and place your trust in someone who can reassure you and deal with the here and now it seems to help.

For many years I could not even talk about it, partly because I felt my family had been through so much without all the focus being on me and also because I couldn't hold a conversation without getting a horrendous headache, later found to be VP shunt issues, though I still find it hard to concentrate without getting a some sort of headache) .

I found that the NHS is absolutely wonderful in an emergency, and without it I wouldn't be here. From my similar experience I found it is hard for others to understand and recognise the times when making a decision for yourself ie: having a shower can be difficult, because you are just not seeing things clearly at that point and it's all too tiring and this is when family are all important in being advocate in getting the care and help you need.

Recovery is a slow........ process and I am sure you are fed up of hearing that? I was.

Good luck with your recovery.

[Fergie65 in reply to saralee21]

Thank u 4,ur response it's comforting 2 no there can be light at end of tunnel I no it may sound strange but I can forgive Nhs 4 what they put me thru but not my family & certainly not my 9 year old I've put complaint in cos if this helps stop this happening 2 some1 else the scary thing was my consultant said the description I gave was 1 of the best descriptions he heard 4 subarachnoid haemorrhage I worry about the long term effect this will have on my son at times he watches me like the parent & not the playful 9 year old wee boy he should be & I blame the Nhs 4 this if they would have kept me in & scanned me he would have spared the trauma my family too can't think 2 much of what my husband went thru having been told 2 say goodbye as there wasn't much hope 4,recovery as a family we r trying 2 count our blessings & I'm hoping when I get my anxiety under control things will look brighter & better funny antidote surgeon asked 2 look at my head wounds & I asked him how come I don't no my name or where I live but I can tell u I hate that fxxxxxg song on the radio he laughed & said I dont no Alison that's how I learned my 1st name

[Kirk5w7]

I hate with a passion some of the songs I heard on the hospital radio when I was in there, it's so funny the things that stick with you but you don't know why, I think it was cos I couldn't get away from some things, I didn't learn to walk again til I was at the rehab unit. Taught me a lot of patience those weeks in the hospital bed.xxxxx

[Fergie65 in reply to Kirk5w7]

Patience & lots of drugs (only joking) I couldnt sleep properly in rehab place cos I was 2 used 2 noisy ward even at night time but I can tell u I still hate seasons in the sun by terry jacks

[cat3]

I just wrote a long reply to you Fergie which flew into space just before I clicked on 'submit'.

It was all about how appalled I feel about your treatment and how I can well understand your loss of faith in the NHS system ; and of course how sorry I am that you were treated so poorly.

Many of us have suffered PTSD since our 'events' which can take months to overcome, and that's after receiving good care, so it isn't surprising that you are still struggling with high emotions/resentments after such a double whammy. But I have to join the chorus of 'it's early days' because I do believe it will fade eventually, really I do.

Please accept a cyber-hug from me. It makes me realise how very fortunate I was in getting the excellent treatment that I did.

Keep taking care of yourself and please stay in touch with us here. Cat xx

[sean1966]

Truly sad story, thought my experience in hospital was bad enough! Keep strong this site is fab and there are some fab replies posted, Cat is incredible with her comments ).

[Fergie65]

Thank u 2 every1 who has responded 2 my post I honestly wasn't going 4 sympathy vote but sometimes it's hard 4 my family 2 hear it all over again thank u 4 your words of encouragement & I'm sure things will get better with the right help I've got appt with a brain injury unit 2morrow so I'm not dwelling on the fact it's Nhs but trying 2 stay positive that these people could b the right people 2 help me I know I'm an extremely lucky girl cos I have a husband who adores me a son who seems 2 love me no matter what fantastic parents & brother & sister in law who all totally support me ps when I woke up from coma I thought I was in my 20"s I thought my husband was winding me up when he told me I was nearly 49 the upside 2 this is my friends will all b 50 b4 me thanks again 2 every1 who responded 2 my post