Carys

Brief Outline:

Carys’ daughter was given ECT when she was 19 sometime after she had been diagnosed with schizophrenia. Carys felt that ECT did her no good but has seen it help other people. She is still struggling to get good support for her daughter 21 years later.

Background:

Carys works for a charity which represents carers, has three children, is married and describes herself White British.

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One night when her daughter was 19, Carys’s daughter came into the bedroom saying that there were snakes in her room. Eventually after a series of events a psychiatrist became involved and she ended up being admitted to hospital under a section of the Mental Health Act. During her first admission to hospital her daughter refused to have anything to do with Carys, something that she now understands happens frequently.

Carys has lost count of the amount of times that her daughter was sectioned and gave up her job to look after her daughter. Carys thinks that a couple of years after she was ill, she had ECT. She was not consulted but was just told by her daughter ‘I don’t know what they’ve done but I think I’ve had some sort of electric shock’ – so Carys assumed that she had had an accident. She talked to the nurse in charge and was told that she had had ECT treatment but she didn’t know what this was. Her daughter had a series of ECT treatments and Carys saw no improvement and no difference in her well-being. Her daughter ‘loathed it with a passion’, was very frightened and had headaches - which she was then treated for. On the 13th session the equipment broke down so they took her to another hospital and gave her her final treatment. Carys had gone to the hospital to be with her, without realising she had left. By this time Carys was angry, and felt that ECT was like ‘another way of hurting her’. She was told it would help but didn’t ever know what it was supposed to achieve. Carys threatened the hospital with a court order but found they were stopping ECT in any case. She says her daughter has an ‘exceptional memory’ and that she talks about ‘having her brain fried’. Carys says that she says things like ‘No wonder I’m still ill, they’ve fried my brain’.

Her daughter has been on many different medications over the years and Carys felt that it was only on Clozapine that there was any improvement. Her daughter spent years going in and out of prison, secure units and inpatient units. She spent a year in a London hospital where Carys says they got her ‘reasonably stable’. She spent another year in a local psychiatric hospital and then a residential unit that Carys thought was only ‘like a posh prison’. In the end her daughter was moved 15 times in 10 years. 

Carys felt that family members and carers have no choice in the care of the person they care for. She felt the only time services were interested in her was when they wanted her daughter to come home. However now she thinks that some of the “old ways” have changed. Looking towards the future she doesn’t know where to go from here because of the lack of support for the right type of accommodation. She wants support for supported accommodation.

Carys can’t begin to express the depth of her anger. She would like somebody to be answerable and nobody ever will.

When Carys’s 19 year old daughter said there were snakes in her room she thought she’d had a nightmare. But her college then reported her stalking her tutor. Shortly after that she was sectioned.

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 people’s 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, she’s 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, we’re 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.

Carys felt desperate and phoned the Samaritans when she didn’t have any support with looking after her daughter.

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. 

In the early years Carys felt side-lined by services as a carer. She felt frustrated about some of the ways in which users of mental health services had been treated but felt that things were improving.

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. 

Carys thinks the situation in inpatient hospitals has improved in recent years, but that the wards where her daughter had stayed years ago were awful. Her daughter ran away from these institutions several times.

She’d 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. 

Carys said her daughter was taking many pills a day when a new psychiatrist said to “bin them” and start again. It made a dramatic change and she started being active.

And she started, she got, I mean she’s 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, we’re binning the whole lot, and we’re 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 people’s the day centre, voluntary. She started actually doing things. 

After Carys’s daughter was diagnosed with schizophrenia twenty years ago she was sectioned several times. On one occasion several police cars came to collect her.

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 she’s better, when she’s 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 

Carys’s daughter had compulsory ECT at the age of 19, however, she was simply told the doctor had made the decision. She was not given any information about what was happening and it was not discussed with her.

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 she’d 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 she’d 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 she’s had some sort of electric shock” And he said, “Oh yes, she’s 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 we’re 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. 

As a carer Carys said you know the person you care for better than anyone so don’t be afraid to create a fuss if needed. Everybody’s illness follows a different pattern and there is a lot of support out there.

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 one’s 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. There’s 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.