Mary - Interview 07

Age at interview: 61

Brief Outline:

Mary's son first became unwell in prison in 2004. He had an acute psychotic episode in 2007. Mary has struggled to get a diagnosis for her son and was shocked at the care he received in hospital. Her son is now stable and living independently.

Background:

Mary is a nurse and has helped with the care for her son, who was diagnosed with schizophrenia in 2007. Ethnic background/nationality White Irish.

More about me...

Mary describes the relationship with her son as always very good; he would ‘always sort of come and tell you if things had happened’. Mary’s husband left when her son was aged 15, and she said that it ‘really affected him’; she put this behaviour down to ‘adolescent shenanigans’. He got into smoking dope, and Mary doesn’t know whether he had depression and then starting smoking dope or the other way around. She describes how once after a girlfriend left him he put his head through a window and cut his neck with a piece of glass. Mary talks about the first time he ‘became psychotic’ when he went out drinking and ‘never [thought] of the consequences’. After a crack-down on anti-social behaviour, she describes how her son was involved in an incident and ended up getting a prison sentence. She talks about how, when she went to visit him in prison, he would begin to imagine things were going on' he told her that people were listening through ‘things in the ceiling’ and that they were ‘always watching you, and listening to what you were saying’. After this, the family contacted a probation officer, who contacted an in-reach team in the prison. Mary says she was told that he shouldn’t be in prison but in a hospital. It took them 6 months to transfer him to a hospital, where he was placed in a secure unit for nine months. She thought at this time he had been diagnosed with schizophrenia, but on reflection realises he wasn’t, as she remembers the consultant telling her that her son had had a psychotic episode brought on by the stress of being in prison. Mary describes how he was ‘ok’ for two years and then in 2007 he was ‘fine one day and the next day he was beginning to get psychotic’. She recounts how she was called back from a weekend away as a friend of her son said that she had seen him ‘standing outside his flat talking about God’ and felt she had to let Mary know. She persuaded her son to see a doctor, who then said he needed a mental health assessment, which came 48 hours later. Mary said that she had a ‘dreadful’ experience as, although her son said he would go to hospital, the police took him in the back of a van. After he spent two days in hospital a consultant said that ‘he wasn’t mentally ill’ and Mary could take him home. Mary told the doctors that he wasn’t well but they discharged him from the section. Less than a week later he was ‘really poorly’ again. Mary talks about how he was ‘talking to himself, laughing to himself, imagining all sorts of things and being overly religious’. Her son had to have an emergency operation for a pilonidal sinus and Mary describes how she got no help. After the emergency surgery, the anaesthetic affected his mental state and care in surgical wards was very poor; mental health patients got poor care and little understanding. Gradually throughout the night he got more and more unwell, and eventually she says that he ran out of the house. Mary felt that she had to ring the police because she was ‘afraid that [other] people would ring the police’. Then Mary and her son experienced a ‘rollercoaster of bad care’' she describes how he ‘just lay about in the dirty dressing’ from the operation. She had been told to take him to a GP to attend to it, but was told he couldn’t leave the ward. He was then transferred to another ward and managed to access his passport, which Mary had given to the ward for secure keeping. He tried to leave the UK from various different airports and ended up in hospital overnight in another part of the country. Mary was dissatisfied with the range of medication he was given. Later, whilst under the care of a community team, he managed to board a plane and was in another part of the UK in a hospital for a month, and Mary worried that he had no visitors. Eventually the team had to escort him back and he was admitted to a ward near the home. Her son was attacked by another patient, and he fought back. He had been unwell the night before; staff knew about this but didn’t provide any extra medication or observation. Mary was asking the staff to consider Clozaril as the two anti-psychotics her son was on ‘weren’t working’ and also affecting his eyesight. In the following months Mary describes her battles with various wards both to get her son the right care and to get information. He transferred wards and was put on Clozaril, which initially seemed to make him worse, but then after a period of six months he ‘got better’. Mary paid for her son’s flat to be kept in his name so he had a familiar environment to come back to. He is now living in the flat and Mary thinks that the community team are ‘the best team that he’s been under’ as they ‘understand his condition’. She says that he is ‘integrating quite well’ and he is picking up old friendships. Mary says that he will never smoke dope again has gained a considerable amount of weight. Mary went to a number of support groups and the best one was run by Rethink, attended predominantly by mothers who had sons who were diagnosed with schizophrenia. Mary found it hard not to ‘focus completely’ on the care of her son and is now spending more time doing other things, whilst still supporting him. She hopes that if he gets unwell again he will recognise it; if not, that services will listen to her and his care will be better and quicker than it was before. She feels that if mental health services listened to carers and family, life would be much better for patients, staff and family carers as families know the patients better. She wonders why there isn’t more preventative care as it would be better for patients and save the NHS a lot of money

Mary says her son finds it hard not to socialise without drinking too much when on psychiatric medication.

I know it has been a long struggle.

 

But I mean I know it’s early days, and it’s something that he’s going to have to live with and sort of try and manage himself. Which he is, which he is doing. He knows he can’t drink too much whenever he’s… and I mean young men that socialise… well I don’t know in this town anyway, no matter what town you’re in, you do end up going out for drinks and so forth. And I think its also trying to manage that as well. That he can’t drink too much. But he seems to be doing all right at the moment. 

Mary felt that she didn't get the same understanding from other people about her son's mental health problems that she would have done if he had a physical condition like cancer.

And people with mental health problems, they don’t get the same help I think as people that have physical health problems, and I mean there’s such a stigma attached to mental illness. 

 

What’s been your experience of stigma?

 

Huh hm. Even though you, I mean, if I used to think that if he’d had cancer, he’d probably get, he’d get more understanding, you know what I mean, from his team of people that are looking after him. You get more understanding from society. Because I used to find that people would, they wouldn’t come near you, they didn’t really want to ask you how he was, whereas if some, even though he was, what I would call ‘ill’ for quite a few years with mental illness, but people wouldn’t ask you how he was, because they’d say oh well he’s mentally ill, in hospital locked up, whereas if you had somebody who say for instance, had, was paralysed from the neck down or you had somebody who had cancer, people would, not that I was looking for pity, not that I was even looking for help, but just a bit of understanding really, you know, but you don’t get that with people with mental health problems, the same way as if you have a chronic illness, like diabetes, or epilepsy or something like that. 

Mary visiting her son in prison noticed that he was imagining things.

When I went to visit him in prison, I mean it was horrendous. I mean, all, all leading up to that, and prison, I mean I’d never been inside a prison in my life. It was awful trying to even to get to visit him. But I noticed then that he was beginning to imagine things that were going on and he said that people were listening, you know, through the things in the ceiling, and they were always watching you, and listening to what you were saying, and he was getting really sort of psychotic then. 

 

And when you’re in prison you don’t have any rights, you don’t anything, you don’t know what to do, because you don’t know how to contact people. So I ended up getting my daughter to come from [place name] and seeing what she thought, and she said, “Oh no.” She said, “He’s not right. But what are we going to do about it?” And I said, “Well…” And he didn’t want us, because I kept saying to him, [son’s name] you know, there’s something, you’re not well, there’s something wrong.” He didn’t want me to do anything about it.

 

Anyway we did. We contacted his probation officer, and she... she got in contact with some new in-reach team that were in the prison service, and it took ages for them to get back to us, but they said, when they went to see him.

 

They said, “That he actually shouldn’t be in prison at all. That he needed to be in a hospital.” But it took them nine months before they actually transferred him to hospital, and he was in hospital for, well in a secure unit, as they call it, for nine months. Okay. 

 

Mary thinks that it is very important to talk to carers who have been through it themselves, to get the right support and information.

I mean it’s just also for the carers if they can be, if they can be strong and that they need to get some help for themselves. Because sometimes when you’re dealing with it, you have to get some outside help to make yourself strong, because I could see myself, if I didn’t sort of step back sometimes, and if I didn’t try to talk to people who are going through the same thing, who’d understand that I was may be going through the same thing as them that I don’t know how I could have coped. Because nobody understands what it’s like unless you’ve been through it yourself. I mean like nobody understands what, the people that understand the most are the patients, or service users, whatever you want to call them. I mean they are the ones when they eventually get to a stage where they can talk about it, they can tell you how terrible it was for them, and they are the ones that have the most knowledge. But it takes a long time probably for them to get to the stage where they can actually talk about how they feel. And if you do talk to somebody who’s at that stage, you can get a lot of insight into how they feel. What I feel for, and I think probably their carers, it the only way you realise and get as much knowledge is from people who have gone through it. And have may be come through it. But you know that it can always go back to that again. You have to be aware of that. To me it’s like diabetes or epilepsy, because you, you, it’s an illness that will always be there [coughs] and it’s like know if you’re unwell, then your insulin might need to go up or down to control an infection, or adolescence or menopause, and then your epilepsy if you’re unwell and you need more medicine or less medicine or whatever, and it’s time to, to treat your schizophrenia like that as well. So knowing, trying to get the right medication, and then knowing when you need extra help for the service user, and for the carer as well.