• Welcome! It’s great to see you. Our forum members are people, maybe like yourself, who experience mental health difficulties or who have had them at some point in their life.

    If you'd like to talk with people who know what it's like

well...here i am

P

pink_angel

New member
Joined
Apr 20, 2009
Messages
4
Location
south coast, uk
i apologise for the VERY long post, just feel its better to get everything out when im able to...my names cat and im 23, single and live on my own - but have carers

as a result of physical and verbal bullying at high school, i suffered with clinical depression, leading to me self harming, which eventually led to me developing bulimia. with my weight at 6 stone, i was sent for an emergency psyciatric assesment, where evenutally got CBT which i had every week for 20 weeks.

i improved being put on eating plans and weight being monitered, i was finally discharged from mental health services at 18 where i started to begin to life my life the way it should be.

Then less than 2 months later, my life changed beyond all recognision. after a night out with "friends", my drink was spiked which put me into a 25 minute seizure and ended up spending 2 weeks in hospital, and spent most of 2005 and 2006 due to having potenolly fatal epistatus (contiuing seizures needed emergency treatment) 3 seizures nearly killed me
also realising my left side was paralysed, having to learn to talk, eat and walk again..i left hospital only just about walking on crutches...by the end of that year (2005) my drs told me i had to go into a wheelchair

that is how it remained, i left my local hospital neuro team after i was told "i was faking it" and was refused all tests and treatment, an NHS investigation was taken out by my local MP..who managed to get me re-admitted for an MRI scan...but the results were never given as the scan went "missing"
i moved to the national hospital for neurology in london, tests were "inconsulsive"
i was diagnosed "conversion disorder", causing seziues - which they arnt conclusive on the cause so being treated for epilepsy - i am on anti-convulsant medication..which i have to add bought my seizures down from 4-6 a day to 1 a week no been every 2 weeks the last 2 years and non epileptic attack disorder - which i do not accept and neither does any of my care team and psychological "drs"

i also have left hemiplegia and hemi-sensory disturbance which means left sided paralysis and no feeling in my left side
i can only walk aided, either with crutches or a special walking frame (kaye walker) on short distances only with the help of splints on my left arm and leg - i also suffer with drop foot characteristic of hemi but most of the time im reliant on my wheelchair

i was admitted onto as multi-dispinary rehab programme for 4 weeks which proved nothing and actually made me a lot worse due to the surroundings i was in but the hospital had this beleif that you will go in and come out "cured" ive not once refused any treatment ive gone aloing with everything and 4 years on...still no further
i was promised CBT at the tavisock in london but they wouldnt accept me until i had local care back up - which my local area was refusing me a psycological assesment...when it did happen, is too late as i got taken of the referal list.

i was refused 1 to 1 therapy even though neurological drs had reccomened CBT..i wasnt allowed it
so i was put onto "group therpay" holistic support to mental health it was, and it was absolutly horrible, the "mental health nurse" just wasnt a nurse they didnt want me from the beginning, again i went along with the drs and did everything i was told to do.

towards the end of last year i was at breaking point, i tried to OD on codine i just had enough, a big care meeting was called with neuro care & mental health and social services who wanted me hospitalised for my own sake..mental health team refused and refused medication even though i wanted it and then CBT was refused again..this time the reason was " i had it once im not allowed it again"
backed into a corner me and my family faced the finicial wall of going private, which is exactly what happened, had a psych assesment within 3 days of referal my full mental health problems were diagnosed - depression - which i already knew then as a result of the spiking now have PTSD, anxiety and panic attacks, social phobia, and food phobia.

despite the "neurological" side diagnosinng Conversion disorder, my new psychiarist doesnt belive it ( he used to work NHS and was on the neuro ward when i got admitted in 2005) i am now undergoing CBT 1 to 1 for however long it takes, i am also on fluoxetine and most recently mirtazapine has been added.

now bearing in mind ALL my phsyical probs were being diagnosed as psych...july last year put a whole differnt light on it, as one saturday night proved...ive had spasms in my back/spine for nearly 4 years drs said it was psychologcal and gave me dihydrodoeine and to get on with it..well this night my spine locked into spasm to the point even moving a finger was agony
the pain increased further to a point of being unable to move, which was extremely frightening. I was experiencing pins and needles down my right side, and was incontinent due to not being able to move from the considerable pain.
decided to phone the on call doctor as the pain had become unbearable and was getting very frightened.
The doctor called me back asked what the problem was, and what medication I was taking.I was taking Dihydrocodeine 30mg every 4-6 hours, which is what is stated on my prescribed bottle. - which i add is the medical maxium allowed!
The Dr then thought that Dihydrocodeine was co-codydromol, in which I had to keep correcting him he then asked if I had any allergies to which I stated I was allergic to morphine and paracetamol.
I also informed him that I suffer with seizures and I had to explain what my anti-convulsant medication was and also made me spell the same of the medication, as he did not know what they were or what they do.
The doctor declined to visit me and advised me to increase my Dihydrocodeine even though I had informed him I was taking the highest dose allowed, and he also advised me to take paracetamol, despite me informing him that I was allergic to it. He also advised to put a hot water bottle on my back and see my GP the next morning. The doctor then ended the call
Having been left with no one to turn to,
I made a desperate phone call to NHS direct, who took my details and within 10 minutes a nurse called me back, who was shocked with the advice I had just been given and was trying to keep me calm on the phone as I was in so much pain and in a state of panic.

NHS direct said to dial 999.
The Ambulance arrived they took a set of OBS, however they were unable to assist with pain relief, as they were not trained to do so.
I explained what had happened on the telephone with the Dr and that I was scared to follow his advice as he had no understanding of my situation or the medications I was taking, and they agreed to transport me to hospital.
At hospital I was seen by a Doctor and given Pethadine to help with the pain and stayed and A&E for a few hours until I was stable.

The Dr examined my back and could feel pressure on the lower right side. He advised me to see my GP to discuss pain relief and further investigations, in which i was then told i could be facing total paralysis and need to see a spinal specialist

i did put in a formal complaint about the "on call dr" and after the call was listened back with the medical board..it was found he was medically incompetant and was sacked and referal to the general medical council...i was going to sue but just couldnt afford to what with paying private healthcare

it was then found i have scoliosis - curve of the spine, in which im now having reglar physio - private as NHS refused!!!! and am in a spinal brace to prevent the curve worsening...now someone correct me if im wrong..that is NOT psychological???i was unable to walk for 9 weeks and couldnt lay on my spine so had to sleep sitting up, until my community neuro team OT manaanged to get me a specialised hospital style profiling bed with pressure matteress as the pressure between a "normal" one was to great on my spine, i also had to get a new wheelchair..which the NHS would NOT fund as i didnt meet their "criteria" so im now paying off a loan for the next 3 years. i also became full time incontinant so im in nappies 24/7

most recently though - feb 09 i was in a car crash with my mum & dad which left me being pulled out the car and now suffering severe whiplash which has affected my right side...which again NHS physios have refused to treat becuase its "psychological" and told me "i should get help" when im doing that..private physio has now found the swelling is trapping the nerves which is why my right leg wont stand without full leg braces

i am living on my own just recently moved to a bigger place thats wheelchair accesable inside and out, my mum dad and sister are my full time carers as i need help with personal care and seizure care aswell as day to day living
 
P

pink_angel

New member
Joined
Apr 20, 2009
Messages
4
Location
south coast, uk
CONTINUED

so...as it currently stands 4 years on...neuros say is pyschological...psychological drs wont treat non epi seizures and CD because they dont belive i have it - im having CBT to overcome the trauma of the spiking..NOT CD

then i get a letter from my neuros after i wrote to them following the crash, as im due to go in june and would like to see my consultant and i want a full review...belive it or not depsite being under them for 3 years ive not once seen him...even in admissions only his registars, i then find out hes moved overseas and got a "locum neuro" so dont even know how long i got him for...who tells me in this letter that he thinks this is all now down to the codine im taking...when ive been on it for 4 years and no dr will take me off them - becuase im allergic to morphine so cant have a lot of painkillers above codine..and then tells me i should have regualr phsyio with my neuro team..but they REFUSED coz they say its psychs problem not theirs

so i am lost, confused and just had enough! since moving house i moved GP surgery and im now on amitryptaline got an apppointment next monday to find out their opinion and to see if its worth moving hospitals again considering my new neuro has told me he cant garuntee that i will see HIM in june so..im going there with no idea if im gunna see my own consultant

mentally life is so up and down, trying to deal with my pshyical issues not knowing what each day is going to bring, im not allowed to work, was declared unfit to do voluntary work and cant be in full time education coz the benefit system dont allow it!
how do i get by? i really dont know, i just want closure on this and i dont think i willever get it, im sick of fighting and having to prove myself to people and sick of the way drs treat me even is theirs a real physical problem...it gets put down to psych, will it ever change, i dont think so

the only way ive been able to keep going is my love for music and have since raised awareness of drink spiking by going public over what happened, just wish life wasnt this way, its made me who i am now but i dont like it

i guess only time will tell..

love me.xx
 
A

Apotheosis

Guest
Hello Pink Angel & Welcome to the forum. :welcome:

It is a lot to have gone through. Hopefully you will find people that can help & an improvement in things.

I am physically mobile - it has been more the MH stuff with me. But that too can be just as debilitating sometimes. I find it really hard to do a great deal beyond the day to day stuff. Routine is very hard.

I had almost broke my neck when I was around 6 - it has caused all kinds of problems further down the line.

Anyway - hope that you can find some support here. :hug:
 
nickh

nickh

Well-known member
Founding Member
Joined
Feb 14, 2008
Messages
1,428
Location
Birmingham UK
Hi and :welcome: to the Forum cat.

It is pretty difficult to know how to respond to your post! Of all the accounts I have read so far here of people's histories yours is quite undoubtedly the worst in terms of mis-treatment and medical incompetence - but even saying that makes it sound like some sort of sick competition which is the last thing I want to do. You are obviously a very courageous person to keep struggling. I can only wish you luck in your continuing fight to get proper treatment - though it is, of course, scandalous that you have to fight at all.

Nick.
 
G

GrizzlyBear

Well-known member
Founding Member
Joined
Sep 22, 2008
Messages
971
Hi and Welcome from me too. :welcome:
 
Fedup

Fedup

Well-known member
Founding Member
Joined
Dec 18, 2007
Messages
1,937
Hello and :welcome: to MHF :)

Sorry you have been treated like this .......... so unfair :mad:

My brother has scoliosis ,so i know the pain you are in .
Don't really know what to say apart from ........... stay positive ( hard i know ) & continue to fight your corner ............. you deserve the treatment & help you need.
 
R

riverofdragons

Well-known member
Joined
Aug 8, 2008
Messages
274
Welcome

I hope you find this place as friendly and welcoming as I do. You are a very strong person, I cannot imagine going through all that you have.
 
N

Nefertiti

Guest
Hi

Wow youve been through a lot, i also am bulimic/anorexic and have been for most of my teenage adult life its a very tough call dealing with it.
Regarding neurologists and seizures im diagnosed as temporal lobe and on high dose carbamizapine the psychs diagnosed me in the end as the first neuro was an asshole, then i was lucky and got a good one but before that there was a spanish one who tried to question the diagnosis and read the eeg wrong. Ive also met people along the way who have been disbelieved, who were without a doubt epileptic one very severely, eventually he met the kingpin of neuro and he got helped but not without nearly dying in the meantime.
Also i was in a car crash and had a spinal injury, i was in agony and kept being taken to hospital by ambulance in what you describe the total spasm,
i remember being x rayed and they were laughing at me and saying are you always like this? I was in severe pain and agony. I got prescribed anti spasmodics which helped and sent home as the consultant was on holiday, i preffered that to wasting my time on the ward. They made me an appointment to come back, big joke, i couldnt even move, i asssured them i would call an ambulance to take me to the appointment. I spent months like you say not even being able to move a finger without severe pain. Luckily my friends helped me out shopping etc eventually they diagnosed a slipped disc i dont know if that was right or not. Eventually i gradually got better, but even now have problems with my back.
The reason i have written all this is to let you know you arent alone.
Dont let some of these medics neuros psychs gp s whatever who have let you down and cast aspersions on your credibility. I have also come accross some right ones and frankly like you i never made complaints about them, because when youre not well its hard to focus and cope with that.
Ive even had one psych kept calling me at home trying to chat me up, a friend of a friend knew the secretary that worked on eating disorders unit and he was giving it to her , and he was married. Believe me they are all out there, theres nothing wrong with you or your credibility it s their problem.
Take a big hug from me, i havent been on here much or for long but i know theres some great people on here. You take care (and dont let the f888rs get you down! XX:)
 
N

Nefertiti

Guest
sorry i also do suffer from psychosis according to the shrinks.
 
S

steve

Well-known member
Joined
Mar 28, 2009
Messages
46
I have been fortunate with the nhs on the whole myself (in some cases the nhs have been very good) but I've known of some serious problems for people close to me.
Think in this case the nhs needs something like dynarod because they seem to have bad blockage in their system!
I was watching a consumerwatch type program the other day, a couple had an issue with a major airline which wasn't getting resolved, until they got the tv prog involved, lo and behold they got what they wanted very quickly.
Long shot I know, I wonder if that could work on the nhs in this case?
You're overdue good times lets hope that its round the corner and lasts forever.
Am impressed by your strength and wish you good luck.
steve
 
Sophie

Sophie

Well-known member
Joined
Feb 20, 2009
Messages
3,214
Location
Spain
Hi and:welcome:
I don't really know what to say, but you have been treated appallingly.:hug:
 
S

*Sapphire*

Guest
Hi and :welcome:

I am very new here too but have found the site most helpful.
I too am so sorry that the NHS have appeared to have failed you in providing you with adequate care/diagnosis. I can only commend you on your courage and strength to get through it as you have done, I only hope you can stay positive through what seems to be a really distressing and painful time for you.

I know you probably have been through all the options already but I know in cases like this sometimes you can get a medical ombudsman to help, or you can contact ICAS, but I know after so many failings it may have wore you down and left you discouraged to take further action.
I hope your appointment goes well, and that you find a wealth of support from the kind people on this site.

Best of luck :)
 
honeyquince

honeyquince

Well-known member
Founding Member
Joined
May 27, 2008
Messages
1,719
Location
Yorkshire
Welcome to the forum. I hope that things start to improve for you soon. We certainly here to support you!
 
P

pink_angel

New member
Joined
Apr 20, 2009
Messages
4
Location
south coast, uk
sorry i havent been able to reply been away for a few days with the family, a couple of you have bought up a couple of a ideas 1 being about going to the media, this has been tried but unfortunaly i have a discraful PCT
if you look up west sussex PCT into yahoo, you will find them...for the reasons of...the saw it viable for the last 3 years to have 1 MAJOR hospital for the WHOLE of west sussex..while ment the downgrading of the further 2 hospitals we have in the area...we have 3 major generals they wanted 1 major 1 local and 1 community...leaving us trvaeling a hour and 30mins to the nearest A&E due the appauling trvael system here and sending accute intesive care and brain injurys to london and southampton...3 hours either side!!

i was apart of the campaign team protesting through london, the lcoal streets, chaining myself to the doors of the PCT HQ, going to 10 downing st and doing all night vigils in dec outside the hospital

THAT is how much OUR NHS cares about us as patients,
as i wrote above 1 incident last july nearly cost me my life..IF i had followed the dr on calls advice. lucky enough i have OCD in me and my my mums a registered nurse and has a BNF ( the A-Z drug book) and i read up my meds) and it was how i knew i was on the max dose...if ididnt..when i asked the paramedic that night what wud have happened if i done what he said his reply was..."over the weeks you would be ODing and gone into liver failure and a slow and painful death"

i then put in the formal complaint and did take it to a medical solicitor but it would have cost me to take it further but becuase i am paying for my healthcare to get myself better..i cant do nothing my hands are tied, but i wont let the nhs get away with anything..

take last month...i have a special hospital bed on the nhs which costs around £10,000...was given it in july 08, but when imoved last month i was told they are NOT allowed to move it to my new home...20 mins down the road due to "infection control" so theytook it away..issued me a new one...then ifound out the one they took away was being SCRAPPED!! so i got them slammed in the paper!

this is where your money goes..on the scrap heap
 
Thread starter Similar threads Forum Replies Date
A_Wilted_Daisy Introduce Yourself 5
micas Introduce Yourself 4
H Introduce Yourself 13
J Introduce Yourself 5
L Introduce Yourself 16
Top