And on one occasion. I can’t quite, chronologically, I can’t quite remember exactly when it was. But I think it was probably after shed been ill a couple of years they decided they were going to start the ECT treatment. Nobody told me anything at all about this. Nothing. I had no idea they were even going to do it.

And at this point she was, I went to see her. Oh, it was a hell of a journey because its twenty miles there and twenty miles back. And it was such a dreadful place, a really awful place. But anyway I went to see her on this particular occasion and she said, I don’t know what they’ve done, but She said, I’ve had, I think I’ve had some sort of electric shock. So I said, Oh my God, have you really? I said, Where did you get that from? Because I thought shed actually had an accident [laughs]. So she said, I don’t know. She said, Go and talk to. Well his name was [name], but what do you, the nurse in charge.

So I said, [name of daughter]’s, you know, convinced shes had some sort of electric shock And he said, Oh yes, shes had ECT treatment. I said, What’s ECT treatment for God’s sake? Never, never heard of it. Anyway he explained the whole thing to me and I said, What are you hoping this is going to achieve? Well were hoping it will help her voices, her delusions etc. etc.
So I obviously had no choice [sniffs] because she was an adult at this point. They carried on week after week after week after week, and I could see no improvement. I could see no difference. She was very scared, she was very frightened. She loathed it with a passion, she was so frightened of it all.

I think it’s much easier now, because carers are certainly recognised enormously. And I would say to all carers, don’t just accept the what is going to be done to your cared for is right. Question everything. Ask why. Ask how many times, as what’s going on. Ask what the next steps are. Ask what they’re hoping to achieve. Ask what the medication’s for. What are the side effects? Get as much information as you can about every single aspect of your cared for’s treatment. Ask what long term plans they’ve got. How things are going to be resolved? Even what brought it on in the first place, but don’t just assume that they know what they’re doing, because the person you care for, you know better than anybody in the entire world, what they’re like, and no two persons illness is the same. So you cannot say, oh this ones got a diagnosis of I don’t know schizophrenia, bipolar, what have you. Therefore they will need exactly the same treatment as the woman next door or the man down the road. They won’t. Illnesses follow such a different pattern all the while. And, and don’t be frightened of make a nuisance of yourself, because you only get one crack at it, and don’t be frightened of people thinking, you know, you’re a pain in the neck or anything. And there is a lot of support there. Theres a lot of advocacy, get advocates involved. Get anybody you can think of involved. Get your vicar involved if you need to! If you need answers and you’re not getting them, bang away until you do get them. And go higher and higher and higher and there is now fortunately, because of the internet, you, you’ve got access to chief executives, you’ve got access to locality directors, you’ve got access to everybody that is going to make a difference. And all their e-mail addresses are out there. And generally speaking, if you go fairly high up in these organisations, they don’t want to look as though they’re not doing the job properly, so the higher up you go, the more information you will be given. And I always remember my sister saying, oh she used to be a school teacher. The parents that made a fuss about her daughter sharing a book, her daughter never shared book. So being a pain in the neck works.

Shed spent years running away, being picked up, put into prison, bought back to the unit, locked up in the most horrific secure unit that you’ve ever come across. Absolutely awful. The regime there was, I should think it was probably worse than the prison regime. Nobody was allowed to go to their lockers after 10 o’clock in the morning. Nobody was allowed to go and lie on their bed regardless. All the staff wore grey battle dress style uniforms. The, they had, their food was absolutely extraordinary. It was awful. I don’t know how they managed to be so ghastly. They weren’t allowed mugs of any kind. They had thin plastic beakers. There was no hot drinks, in case of accidents. Every single stick of furniture was screwed to the floor. There were bars on all the windows.

The way people were spoken to, including visitors families, was just incredible in its awfulness, absolutely dreadful. And because she continually ran away, mainly because she didn’t want to be in the hospital obviously [laughs] that’s why they decided to lock her up.

And she started, she got, I mean shes been through hundreds of psychiatrists over the years, because everywhere has got their own psychiatrist. At one point, well when she actually moved into [name of place] she was taking upward of 80 pills a day. She had ones to wake her up, ones to put her to sleep, ones to get her better, ones to get her worse. You name it, she had pills for everything and that was when I realised what all the dreadful boils etc. were coming from. It was the lithium she was taking, and I discovered afterwards that that’s quite well known, having started talking to some service users.

But she had a new consultant psychiatrist who was a most amazing man. Absolutely incredible, and he said, Right, were binning the whole lot, and were starting again. He obviously kept the clozapine going because that was the most important one. But everything else went straight in the bin. Most of her tremors stopped. She woke up, she started taking part in life. She joined an aqua aerobics club, she started, oh she worked in an old peoples the day centre, voluntary. She started actually doing things.

I don’t know how many times she was sectioned. I’ve lost count of how many times she was sectioned. She was sectioned for stupid things. For example, one dreadful night, during the course of the day her social worker had been to see her and she told her didn’t want to see her. And she made the mistake of actually touching her arm. And that night, and it was a most filthy, awful day in November, and it was dark and I had six policemen in my house, two police cars with the lights going outside. A doctor, psychiatrist, social worker, all taking this tiny little girl away.

She said to the policeman, she was crying, and I was crying. She said, I’ve got to go to the toilet. So he said, we were all downstairs, so he said to her, Go on then. And he followed her up the stairs. So I thought I don’t think so, so I followed her up the stairs as well. And he said, Leave the door open. This is a 19 year old young woman. And she said, I’m not going then. So I said, Don’t be so stupid. To this policeman. I said, Shut the door, [name of daughter]. Anyway she opened the door two minutes later and she said, Mum. And I said, What’s the matter? She said, I’ve started my period. So I said, Okay. So I went into her bedroom, got what she needed etc. and handed it through.

By this time there were two policemen at the top of the stairs and I said, What do you think you’re doing? I said, Go downstairs, go downstairs and wait. I will bring my daughter down, when shes better, when shes sorted. So they started, Oh I don’t know, we will do I said, If you don’t go downstairs, I’ll throw you down, please yourself.

So they went downstairs and I said to [name of daughter], Shut the door, lock it, do whatever you need to do. Nobody will disturb you. I will stay on the stairs until you’re okay. She was still crying obviously. And I went downstairs and I said, This is enough. I said, I want you all out now, every single policeman in this house. Out. And I want one of those cars gone. And they took her to the unit in a police car

But as far as actually support is concerned at the worst times there wasn’t any for anybody I remember in my really, really bad, bad times, occasionally I used to ring the Samaritans because you can just pour everything out to them and they were very good and they would sit and listen to you forever. And in the dead of night when everything was really awful they were very helpful. They don’t give you advice. Well I mean they can’t really because I mean what would they say? But they will always listen and it doesn’t matter what time of the day or night it is so [crying].

I’m very glad that they were there.

Yes. They were. They were very good. I remember once I rang them and I said, That I’d phoned them two or three times in the past and I was just ringing them up to say thank you [laughs]. And they said, Oh nobody ever says thank you [laughs]. They said, People just move on and we don’t hear from them again. I said, no, the dead of night is the worst. That’s when all the ghosts come out isn’t it, in the middle of the night when all the horrors happen, and you go through in your brain all the ghastly things, and you don’t know how to solve it, resolve it. It’s just hopeless.

I did manage to put some of my feelings, about the way [name of daughter]’s been treated over the years. And the dreadful regime, really, really dreadful regime. And the the absolute, I can’t think of the word I’m groping for now. the family and the carers have no choice. They just, whatever happens to their service user it’s always as though the only time they’re interested in you is when they want her to come home, or want her to do something. You feel really, really inadequate and very, very frustrated, because you know in your heart that what’s happening isn’t right, but you have no rights at all. You have no choices. Nobody really listens to you. They might occasionally if you get really mad and sound off, but they’re only paying lip service to you, they’re not really interested in how you feel, but I think things have changed. I do think things have changed, and they are that much better.

I find consultant psychiatrists to be totally entrenched, I’m going to get this word wrong, I’d said intransigent. They have no concept of families. They don’t really have much concept of service users. They seem to be almost like a law unto themselves totally different from consultants in other health care situations, and I don’t know where their enormous conceit comes from. But they do have this built in idea that if they think they want to do something, it has got to be right and they’re not right. They can be obviously.

But again we are seeing some young consultants coming into the trade as it were who are far more accepting and far better with carers which is really very good.

When she first became ill, nobody, it’s the most, it’s the most difficult thing to understand… I don’t think people think about mental illness in everyday life. I think they think about heart attacks, cancer, all those, sort of, diabetes etc. But nobody ever thinks about mental illness. It’s not on peoples radar and when it happens to you it has the most devastating effect you could possibly imagine. I went to talk to the doctor. She came into my room one night and told me that her room was full of snakes. And, she was at college at the time. And she was never academically very brilliant but she was very fit, she was training to be an aerobics teacher and a beautician and hairdresser. And she loved life, she really loved life and she was strong and fit and slim, and very beautiful.

And she came into my room one night and said she had, the room was full of snakes. And she couldn’t sleep there. And I just automatically thought like everybody does, even though she was 19, shes had a nightmare. So I said, Oh well, come and jump in with me. And didn’t think any more about it.
Two or three days later I had a phone call from the college to say had I noticed anything strange about my daughter, because she had picked on a tutor there and was staring continually, never taking her eyes off this tutor, following him round the college and staring and arriving from behind walls and just staring? And they knew that things were not right.

Anyway I went round to see the doctor and he subsequently said, You know, were going to have to get her to see a psychiatrist. Etc.

So a consultant psychiatrist came to my house to interview her and they sectioned her, and she went down to [name of hospital], the local psychiatric unit and she stayed there for eight months on the first trip.