British Lung Foundation

used as a human guinea pig!!!!!

Hello all i have not been on here for a long time as i have been fighting for my medical records from 2003 when i was in a coma (drug induced, midazolam and ketamine) When the ambulance came and picked me up from my flat in birmingham i was awake alert and talking in full sentence's at the time i have now recieved my records it states.Upon arrival at a&e (heartland's hospital birmingham) i was alert looking well and speaking in full sentence's. I already new i had been recruited onto a drug trial BALTI 1 (beta agonist's in lung injury drug trial) as it had been explained to me when i finally woke up from my coma.I was given a sheet of paper confirming this when i left the hospital.It was 2 years later when the hospital said they would release the outcome of this drug trial and when i was told that i would be able to find out whether or not i was given a placebo or i was actually given the drug they where testing on me.To my horror and shock when i tried approaching the hospital for these detail's i had the first door shut in my face in regards to this drug trial.As it took me nearly 3 years to recover i was more worried about my own health both physical and mentally as i was not offered any re habilitation or any counselling.At the time i was 29 years old and had to go and live with my loving parent's.A couple of years later after i had met my lovely fiance and gained some confidence back in myself i thought i would try and persue the hospital again for some information but yet again i had another door shut in my face and this knocked my confidence back a couple of years and caused me to sink back into depression.I turned 40 this year and thought sod it i still need some closure as to what happened to me and now i was quesioning what the hospital had done to me and requested my medical record's for my stay in hospital in 2003 a lovely lady from pals finally helped me obtain my records for me (this is when the nightmares and flashbacks started occuring and i have sunk back into depression again).To my shock and horror i found so many failings by the hospital.When i arrived at a&e i had a serious head trauma which was not noted by the a&e staff and no note's relating to this where in my records and a very important part of this had not been filled out and a statement of my injuries was not asked for nor given to the police.I then noticed that my ex girlfriend at the time had given a false name even though i had told them her real name on arrival and my family all called her by her real name the hospital staff did'nt pick up on this.At this time i felt i would ask my parents if they knew about this which they did not and then i discovered that the hospital had recruited me onto this drug trial and started me on it by hiding the drip containing this drug trial in my backside so no one could see it on the 3rd of august 2003.I asked my parents if they knew about this and to my shock they said NO we where not asked if they would be happy for me to be recruited to this drug trial 5 days after they had already put me on it. Which my family then had to discuss this all together as this was an untested clinical drug father gave consent on the 8th of august to the hospital and they accepted this but to my shock i noticed that my father was not changed as my next of kin until the day i came around from my coma which was the 11th of august.Since leaving the hospital in 2003 i was diagnosed with COPD in 2008 at the age of 34 the lung specialist i saw on that day took me into the waiting room and said look around i am treating all these people for the same thing as you have got you are THE youngest person i have treated with COPD at that point i had 69% lung capacity which now 6 yeras later is a terrifying 39% with the lung age of a 99 year old. I am now at the belief that the drug trial i was placed on has had a serious and detremental affect on my health and am now seeking the truth via a solicitor as the hospital and the people that sanctioned this drug trial and put me on it WITHOUT anybody's consent will not talk to me at all hopefully one day i will get my closure in regards to this matter and hopefully it will prevent this happening to anyone else!!!!!!!!!!!!!!

10 Replies

Wow! What a story. It's scary to think what they can do. I know when I was fourteen or fifteen they tried a new way of operating on me when I had my appendix out but I don't remember anyone asking to try it. Luckily all was ok. I'd forgotten that till now. X


This is horrendous.

I wish you strength and luck with your campaign. I hope you have got help from your MP.


Truth will out eventually. Good luck Terence. Take care. Xx


What a dreadful experience terence. I hope you get the answers you are looking for soon, this has gone on long enough.

Good luck

love cx


That is a truly terrible thing to have happened terrance and I really hope you do get your closure. What has this country come to? I didn't think the medical profession could sink so low but it seems I was wrong. I wish you all the very best in your quest. xxxx


What a nightmare for you. I wish you luck in your quest for justice. xx

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Omg Terence what a horror story.Iam so glad you have now found the strength to continue to pursue this catalogue of nightmares and finally get some closure and put it to bed!Goodluck keep up the fight for the truth Terence. :) Janexx

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Dear Terence,

I read your story in complete shock, and horror, and disgust - but NOT in disbelief. You have gone through some pretty awful experiences; things that would probably make anyone hugely distressed, and very distrustful of the health care professions. It would appear that very little has been fully explained to you, and that when you have asked for your concerns to be investigated, the response has been shoddy, at best. No wonder you are so worried.

When things happen in our lives that we feel

a) we had little control over

b) we were not fully informed

c) we do not know the full truth

d) errors may have occurred that someone is trying to hide

it is perfectly understandable that this will make us stressed and anxious. It is also perfectly understandable that we will want to get to the heart of the matter, and reveal the truth. Our lives are our own; it is scary to think that there may be aspects of them that remain unclear to US. Especially when we also have a deep sense that others may know more than they are letting on.

I say that I was not disbelieving of your story, simply because I can report a similar experience. I have a parent with mental health problems, and when I was little I was fostered (more than once, I understand) because of this. I have NO IDEA why my other parent could not look after me (my parents were, and have remained, together despite the mental illness issue). I just know that I was sent to stay with relatives. I also know that, aged only three years, I was made to start full time at School a year early. Again, this was because of my parent's illness. I had already been at Nursery since the age of two, but this was "not enough" for some reason. My parent(s) clearly wanted me away from home for longer, and it was also arranged that a lady carer would collect me after school and give me a meal if my own parents could not. Sometimes I stayed overnight.

How do I know any of this? Well... I WAS BULLIED FOR YEARS AT SCHOOL BECAUSE OF MY PARENT'S MENTAL ILLNESS, AND BECAUSE OF MY ODD FAMILY DYNAMICS! That is how I started to know something was amiss. However, I only really heard the odd bit of gossip from the bullies.

For years, my parents hid things from me. I did not know that it was my Uncle (my father's older brother) who I had once been fostered with, until a few years ago - and only because my mother felt guilty as my Uncle was dying of cancer. It all "came out in the wash"! I was, by then, about 35! My mother also told me a few things about having to start School early; such as who was involved in making the arrangements (including an Aunt {my father's sister}, a Teacher who was friends with my mother, and a Doctor who was a friend of the family). To this day, THIS IS ALL I KNOW!

If I try to ask my family, I am blocked with angry refusals. My father even slammed the phone down on me once, as I tried to ask questions. He insists that "we do not talk about the past". I have contacted Social Services, and the Education Authority to ask to see my fostering records on more than one occasion... EVERY time, I have NOT had a refusal, I have instead been fobbed off and "passed round the houses"! NOBODY has denied the existence of my fostering records - they have simply kept on and on telling me that "they must be with another department". To the point where it is infuriating! I truly feel they have something to hide! This has dragged on for YEARS!

To add insult to injury, I have had health problems of my own. I had Counselling many years ago for stress, after graduating from University (the cause of the stress was my family dynamics!). More recently, I have been diagnosed with Endometriosis (a fertility/menstrual problem that causes chronic pain and fatigue, as well as lots of other problems). I received some VERY POOR treatment from my G.P. and Hospital Consultant, including misdiagnosis, cancelled surgery (twice, short notice, caused by the HOSPITAL'S STAFF), failure to provide accurate treatment, and prescribing of inappropriate medication. As a result, I asked to see my medical records.

Well, it took AGES for the services to comply with this request. Then, when they did, I immediately noticed that LOADS (and I mean pages and pages) of my medical records were missing - whole YEARS of them. Furthermore, I noticed that there WERE records there that should NOT be there (my Counselling records, which were supposed to have been separate). When I looked at these, I saw that the Counsellor had written offensive comments about me - SHE WAS ACTUALLY BLAMING ME FOR MY FAMILY PROBLEMS AND HAD WRITTEN THAT I OUGHT TO CHANGE MY BEHAVIOUR TO BE MORE SUPPORTIVE OF MY MENTALLY ILL PARENT! She had also made personal comments about the clothes I was wearing!

I found other offensive, and inaccurate, comments in my records. My Gynaecologist (the one who got my diagnosis WRONG) had written that he thought most of my symptoms, and the reason I could not conceive, was "anxiety". Like I was just "stressed" about "normal period pains"... NOT that I actually had serious Endometriosis and was infertile (which turned out to be the TRUTH). I got the impression he was trying to accuse me of Hypochondria! Most worryingly, I noted SEVERAL comments that all seemed to infer that my health problems were "mental illness", and that I was "making up" physical ailments. There were inferences that suggested that because I had a mentally ill parent, medical professionals were taking it for granted that, if I came to them with an illness, it HAD to be a mental illness! THEY WERE RULING OUT ANY PHYSICAL CAUSE WITHOUT EVEN FULLY INVESTIGATING!

So, I can TOTALLY accept what you have said. I can TOTALLY accept that medical people can make mistakes, get things wrong, blunder... AND TRY TO COVER IT UP. I can TOTALLY accept that they can say, write and do things WITHOUT your permission... AND TRY TO COVER IT UP. I also think that they try to cover up things that have happened that have something to do with other family members. Or things that may be complicated, or may lead people to question their actions.

To this day, I have no real idea why I was fostered. I have no real understanding of the truth about my family background. I have no understanding as to why I was allowed to be bullied because of my mentally ill parent; or why people "judge" me negatively for having a mentally ill parent. I have had foster care records, and medical records deliberately (?) hidden from me. WHY? That's all I want to know. THIS IS MY LIFE, AND I WANT TO KNOW THE TRUTH ABOUT IT.

Just like you, Terence, I will fight (forever, if I have to) to find out the TRUTH. I know how important it is - to our sense of who we are, to self-esteem, to belief in ourselves and others, to trust.

I'm sorry this is such a long post, only I really identified with what you said. I genuinely hope that you do get the answers you so deserve - I'll cross my fingers, toes, everything! Keep trying, and keep asking.

All the very best,


P.S. Just a few links to organisations that might just help you out...

1. AVMA is a UK charity that fights for patient safety and justice. They provide free, confidential advice and support to people affected by medical accidents, negligence, poor care, and so forth... their contact details are:

Action against Medical Accidents, Freedman House, Christopher Wren Yard, 117 High Street, Croydon, CR0 1QG. (Helpline: 0845 123 23 52) (Website:

2. The Care Quality Commission regulate the care industry and check that standards of care in Hospitals, G.P. Surgeries, Social Services and suchlike are up to scratch. They inspect organisations that provide care, and you can report instances of dangerous, or poor care to them. They cannot investigate individual complaints, but they do compile dossiers and reports about organisations, in which any incident(s) you report will be included. Their contact details are:

Care Quality Commission, National Customer Service Centre, Citygate, Gallowgate, Newcastle, NE1 4PA. (Helpline: 03000 61 61 61) (Website:

3. The Disability Law Service can give free legal advice to disabled people, as well as providing details of reputable medical negligence Solicitors. Their contact is:

Disability Law Service, 12 City Forum, 250 City Road, London, EC1V 8AF. (Tel: 020 7791 9800) (Website:

4. ICAS are the independent complaints advocacy service, and assist people to go ahead and make formal complaints against the NHS. They help people through each step of the process, and provide you with a named assistant who you can talk to on the telephone, or meet face to face. This assistant can help with drafting letters of complaint, with looking up the right people to contact, and with explaining the complaint procedures (amongst other things). Contact details are...

Head office: SEAP Hastings, Upper Ground Floor, Aquila House, Breeds Place, Hastings, TN34 3UY. (Tel: 0330 440 9000) (Website:

N.B. To find a local branch and an adviser in your area, go to the website and look up to contacts page.

Good luck and I hope that you manage to get answers. Best wishes.


Ask for help from Andy Burnham MP, he is shadow health minister, he has been very helpful to me several times. He may not be able to help directly because he's not your MP, but he could ask your own MP to get in touch with you. Good luck, I hope you get the answers you need x


Good advice needtobreathe. X


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