Mae ganonion ar-fer!
Mae mwy ffordd letter iawn!
Mae following suied enw!
Mae cais ei wneud uponied!
Welwch am yrwyf am yma?
Fa yna hefyd dwi yw fod i yn led'i aged
Roedd I itch wedi gwneud am yr hyn o'ch sgolw Ynw mysglwyd
Fa'r hyn cymaint mae'r rhwng Arrhino
Caren was definitely confused and not in her right mind, if you like, to put it like that, when she slipped and fell from a window.
She was trying to look at a crane that was putting scaffolding on a roof.
She might have had some symbol for her because she was scared of heights.
She would never have stood at a window.
I saw pills lying on her bed and she was getting dressed and the coroner's assistant said it wasn't suicide.
I said, how do you know?
He said, we have ways of knowing.
I think it was because she was actually going in her room to get dressed.
She wanted to go home and we were in a holiday flat.
The whole thing was so confusing about how it could have happened and what it was and what it caused it to fall.
The window safety catch was broken, it swivelled.
How old was Caren?
She was 30 when she died.
The thing was, for ten years, we'd sort of been treading on eggshells a little bit because when she was 20, she had a tummy problem.
Because her dad had ulcerative colitis, we took her to a gastroenterologist, which was probably a bit silly because she probably had a tummy upset for a few weeks.
I was one of these mums that was concerned, a concerned mum, so took her to a gastroenterologist and he prescribed a little brown pill.
That my husband took.
So he felt secure because dad took it, he was fine, sulfosalazine, a sulfonamide.
Now I know, it can cause psychosis.
In Caren's case it did, a sudden onset of psychosis.
So I won't go into the history because I wrote an article that was in the Guardian and people can read it.
It's on my website and it's too much to go into the whole history.
So I won't go into the history of what happened with Caren but after she had that first onset of psychosis
and was flown back by air ambulance because we were on holiday to the University College Hospital to her consultant.
My husband was sitting by the bed and he walked up to Caren unconscious and he went, nothing to do with me.
He didn't speak to my husband at all, swivelled on his foot, literally nothing to do with me and walked away.
Paul was with him, my son.
He said it was unbelievable, the consultant didn't talk to them.
It was like, what was wrong?
There's something where you began to piece together.
Doctors are afraid, doctors run away, doctors don't know.
Okay, she went through the usual thing, the psychiatric hospital, the Hall of Peridol, the horrendous hallucinations.
They had to make her unconscious, she was suffering so much, she went paralysed.
I mean everything, all the side effects of the psychotropic drugs.
You don't know what's happening.
You're like a huge safe chamber, hanging from the sky, swinging, bang, and then bang again.
Because you think they're going to be alright, they're with the doctors.
But no, they give them more drugs, they get worse.
So, she came out of the hospital and all her drugs were stopped.
Suddenly, after about three weeks, psychotropic drugs stopped.
I mean, a week or so, a few days after, she starts going to a relapse.
Hardly surprising now, I look back.
I don't know how long she's been on the drugs, three weeks, six weeks, I don't remember.
But she relapsed.
So, we got through this eventually.
And for six years, Karen lived a life.
She left university because we thought perhaps that was too much pressure or whatever, we weren't sure.
I thought she needed some counselling to sort out, in her own mind,
what it was like to have gone into that strange world of fantasy, paranoia, whatever.
The psychiatrist said, no, no, put it all behind her. Don't discuss it.
I said, I'm sure she needs to see a psychologist.
He didn't want her to see a psychologist.
He was like, put up the garlic and the cross and the psychologist.
No, you know, the old-fashioned psychiatrist, old gentleman, he's died now.
I didn't want it. But I insisted, and he let her go to somebody he approved of,
who proved to be not very good, I have to say.
Anyway, but she was all right for a few years.
She got a secretary job. She picked herself up.
She went off to Japan, where her brother was working.
She had some interesting experiences, worked in America.
Suddenly, we start getting the pattern again.
She's somehow not right, didn't connect it to the fact that she'd been given dinet.
This drug that I've done so much campaigning for.
It would take too long to go into the whole thing.
She slipped downhill and the dinet triggered it.
She was given an antidepressant. She suffered agitation, acathisia.
She went to the GP to try and see somebody about it,
and they said, sorry, we haven't got an appointment.
So they couldn't assess. This girl was agitated.
She didn't explain perhaps, but you could see there was a problem.
So she came home and went up to her room and took some sleeping pills to calm herself down.
And when I realised, when I saw her falling asleep at the table,
I thought there's something wrong here.
We went up and I realised that I took her to the hospital.
Perhaps it was a mistake. She didn't need to have a stomach pump.
It wasn't that many, but it was enough to worry me.
She was in a psychiatric unit. So that was like six years after the first breakdown, which was 1991.
So this was 1990. What am I talking about?
It was 1985, her first one. So this was 1991.
So they kept her then on the drugs for long.
You see this is when you start getting into the psychiatric system, because it's happened again.
The psychiatrist more or less said, well, one psychotic episode, perhaps,
but two, you know, looking a bit dodgy, they want to keep the drugs going then.
And of course, she was very sensitive to the drugs.
And she did come off them and then she booked to have her wisdom teeth out.
This was why I was very worried about the anaesthetic.
I knew what it would like to be a mother concerned, knowing that your child is vulnerable to psychiatric side effects.
But the GP agreed, self-asalazine, of course, her first onset of psychosis.
And I still didn't... I don't think I fully realised about Diana yet,
because we didn't have labels in those days, we didn't have leaflets.
But I think the anaesthetic was a terrible shock, because it was a shock to this consultant as well.
She'll be fine, she'll be fine. I don't know how much the anaesthetist knew.
And this is another thing that worries me, that they don't communicate with the GP,
they don't know what other pills people have taken, they don't know if they've taken even vitamins or anything.
Nothing's discussed before the anaesthetics.
You go in five days later, she was absolutely fine, she came out, she was high as anything, you know, happy,
wanted to go back to work, seven days it was actually, seven days she started to become paranoid.
So anyway, to move on after that, after the episode, after the anaesthetic,
she was on the psychotropic medicine.
And what really started me on the path of a charity and doing the research,
was I'd picked up her pills, I'd started really thinking what had happened.
I'd persuaded her to come off a sleeping pill to Mazapam.
I didn't know you have to taper them, because we weren't told.
She'd stopped it, she said, Mummy, we're really pleased, I'm not taking my sleeping pills anymore,
I know you're not happy about it, I've stopped it.
Just like that, just the week before she died.
And basically, I found a prescription for procyclyding, chemodrin,
it's an anti-parking syndrome, because Karen used to get a sort of paralysis,
her tongue was like, ah, ah, ah, he couldn't sleep, and she'd go stiff.
Dystonio, I don't know what all funny names they call it.
I saw her psychiatrist, I decided to go and see these doctors and talk to them.
And I said, she was on three tablets of this today,
and I said, I read in the pharma copia, Martindales, which is written by a pharmacist,
that you should come off it every three months, because they don't want you to stay on that drug.
Because if you're still suffering the side effects, you should change the original drug.
That's in the data. She'd been on it 18 months.
The psychiatrist said, oh, she should have only been on one a day.
I said, but this is your prescription, three a day.
She said, oh no, that was only meant to be for one week.
So what had happened, you had these repeat prescriptions, nobody had ever discussed it.
The GP hadn't written to the psychiatrist, the psychiatrist hadn't written to the GP.
I know I'd said to the GP, shouldn't Karen have a blood test?
He thought the psychiatrist was doing it.
I was always worried they weren't following up for side effects, and how she was physically.
She didn't seem well. Her colour was bad.
She was just draining away.
It was like the life was being drained out of her.
From being a vibrant girl who'd appeared on stage with her brother in Young Magician of the Year,
and been on the stage at Theatre Royal Stratford, done amazing things.
She was just becoming a shadow of herself.
So when I realised that she'd been overprescribed the drug, I went to the British Library.
I hired a computer, put in the names of all the drugs.
I would get all these reports.
Nightmares, terrifying nightmares on Sulphysalazine, Dynet,
all the little reports from the doctors, letters in the BMJ, this kind of thing.
So I thought, this is bigger, this is like a can of worms.
I felt as if I was opening a can of worms.
I decided to form a charity because I thought, I've got to do this properly.
If I'm going to do it, I've got to do it properly.
That's how it started.
It was really to create awareness, to find out what was happening,
to put webpages up that people then contact me.
I haven't put up webpages for shantix, anti-smoking drug.
So I haven't had reports, I haven't had the swimming pills, I haven't had time
because of my website, I couldn't access it.
But every time I put up a web page, just like Claire said earlier,
she found my website when her son had killed himself after anaesthetic.
Mine was the only website she found on the internet,
talking about psychiatric side effects of anaesthetics.
Isn't that incredible?
So that's what it's all about.
I said just now in my talk downstairs, I said,
I heard in America when I was studying suicide prevention
because I had a millennium award in 2000.
I went out to suicide conferences.
I remember one woman saying, she changed the whole law in her state
and she said, one voice can be heard.
And one voice can be heard.
And I said, my emblem's a butterfly.
Let's all start this butterfly effect.
Write to your MP. Go to see your doctor.
Go to the PCT or whoever organizes your local health authority.
Go to your MP.
Start hammering them, telling them all the time we've got to do it.
And if I can just inspire other people to do it, that's important.
So I just want to say today, 10 years on, we have moved on.
When I had my first conference in 2001, the General Medical Council,
after lots of badgering of one particular professor by me,
did actually amend their guidelines on medical education
and added side effects, not adverse drug reactions, side effects.
And they said, thanks for drawing this omission to our attention.
So that happened in 2001.
I thought, oh, and somebody said to me, one of my trustees, Dr Lobel,
he said, oh, they had to listen because you had your conference.
So I thought, good idea, have a conference, they'll listen.
2004, I was told by the mental health journalist, Katherine Jackson,
she thought that the panorama programme evolved after my conference
because, I don't know if it was after 2001 or 2004,
because everybody met and it moved on.
And that led to the Syroxat investigation of the yellow cards
by Dr Hertzhammer and Charles Meddewyr
and the findings of the suicide risk and the warnings.
So this conference, I phoned up the MHRA
and I found Sarah Walk, now Sarah Morgan,
actually said to me, we're going to add guidelines on withdrawal into the BNF.
I thought, good, why is she telling me this?
It's because I'm having the conference.
It makes them think somebody's doing something,
we'd better be seen to be doing something.
Now, the person I'm really proud of, really proud of today,
is Dr Anita Holcroft, because when I first contacted her,
her emphasis was on allergies and side effects of painkillers and anesthetics,
but she hadn't really looked at the psychiatric side effects.
And I've been badgering her and sending her emails,
you know, with all these different people who've contacted me,
and she said she could do case studies possibly,
so I've been trying to get information.
Today, I thought her slides were amazing.
The investigation she's done, the way we've come on,
the way the Royal College of Anesthetists have listened,
because I really told them what I thought about the fact
they had nothing about psychiatric side effects.
I even got one of my students who came today,
he was from Chickwell School, he was going to study to be a doctor.
He was doing his A-levels,
and one of them actually investigated anesthetics.
I said, see if the Royal College helped you,
because they wouldn't come back to me.
I had to keep sort of picking your way,
and they've now got on their website confusion,
but it's very hard to find.
If you're lucky if you find it.
But we have moved on,
and hopefully we'll move on even further.
We've come a long way,
and I would like to feel that one day I wouldn't be needed,
because all the doctors would know,
and it would all be in the BNF,
and people would be aware,
because awareness saves lives.
