Rachel - Interview 29

Age at interview: 41

Age at diagnosis: 19

Brief Outline: Rachel didn't have contact with mental health services until she was 19. Since then she has been to hospital 7 times but now has a direct payments support worker and is monitored more regularly. She now does voluntary work, looks after her son, lives independently and has done an art course.

Background: Rachel does voluntary work, is single and has one son who is 7. Ethnic Background' White British.

More about me...

Rachel didn’t have any contact with mental health services before her parents split up when she was 19. When she became ill she was working in a psychiatric hospital for the elderly. She felt suicidal but says it is difficult to describe it now as she can’t remember. She got the diagnosis of schizophrenia at this time. Rachel has been in hospital seven times, sometimes voluntarily and sometimes she said they would ‘leave you ill for too long a time period’ so that she was sectioned. She remembers ‘losing the plot’ and being ‘very disturbed’. She went to University to do a BA and MA and had ‘four good years’ of not being ‘unwell at all’. Her dad suddenly died in an accident, but because of the inheritance she was able to do a lot of travelling. So she felt as a result of something sad, she was able to enjoy university days. After university she got ‘periods of unwellness’ that didn’t have ‘direct triggers’. Sometimes she felt that she was getting high and ‘feeling better’ when she wasn’t ‘as organised with [her] medication’, but now this is brought to her house in blister packs and she is ‘monitored’. A CPN visits her house every three weeks. In previous places where she lived she wasn’t checked up on, but now she has regular visits and a good standard of care, in which a CPN would visit, if she had missed an appointment, in order to say ‘How are you?’.

 

Rachel now has direct payments and has a direct payments worker who comes Monday to Friday; Rachel then looks after her son or visits her parents at weekends. She says she is better without ‘her own company’ and finds it nice to have someone around. She visits a service user centre in the afternoon and finds that working ‘has been a real tonic’. For three years she’s done an art course. She has had a problem ‘putting on weight’; however now she does exercise on prescription and is going to do a gym induction. She has put on weight because of the medication, and sometimes finds the medication ‘very sedating’ so doesn’t want to take it when she gets ‘too tired’. If she doesn’t take her medication ‘for a few days’ she can’t sleep, as she has a tendency to be ‘high’ with the ‘mania of bipolar disorder’. Having medication in blister packs, being seen at home, having direct payments and going to a service user centre have all been for Rachel ‘tools of staying well’ after ‘quite a long stint of having periods of ill health’.

 

Rachel took Stelazine when she was diagnosed with schizophrenia. Now she has been on Lithium for quite a number of years and she’s also taking Epilim Chrono (Sodium valporate) and Risperidone for her psychosis. When she’s unwell she takes Diazepam, Clonazepam, Temazepam and Haloperidol. She felt ‘quite drugged up’ when she was unwell, but didn’t want to go into hospital because of the ‘atmosphere of unwellness’, so if she stays at home her ‘recovery is quicker’. Rachel has had three different types of therapy, and had a really connected relationship to an ‘eclectic therapist’. Rachel says the psychosis is ‘amazing’ as you can have ‘good experiences and bad experiences’, seeing amazing paintings and having auditory hallucinations of beautiful music. She has also had hallucinations where she felt things ‘crawling up’ her, and in one incident she thought she was being raped as she felt ‘vulnerable’ in a mixed sex ward and it was ‘manifesting in [her] head’. She finds psychosis ‘very powerful’ and the voices can be ‘very negative’.

 

She says that she ‘lost quite a bit of [her son’s] childhood’ as she was in hospital and moved away. She feels that the relationship that he has had with her has affected him and feels ‘very guilty’.

Rachel always ‘read up about’ her diagnosis and made sure that she got what she was entitled to when it came to support, and recommends others to do the same. She has also always read her notes. She thinks it’s important to be given a diagnosis, and feels that you need to read up a little bit, in order not to ‘take somebody else’s word for it’. She is now diagnosed with schizo-affective disorder and borderline personality disorder. She is currently doing a recovery course and feels that she isn’t ‘100%’ but about 85%.  

Rachel thinks it's important to get the right diagnosis and found that her original diagnosis of...

And what’s your attitude now to the diagnosis? In general the psychiatric diagnosis?

 

Well I think it’s important to give a diagnosis because when you read the symptoms, because I got the Oxford Book of Psychiatry and I thought they haven’t got me right. You know, they haven’t, they diagnosed me with schizophrenia and didn’t take into consideration my moods so they, you know, I’m schizo affective definitely in between the two, you know, definitely and I mean you need to read up a little bit, don’t take somebody else’s word for it really and you need to make sure that you feel happy with what they’re telling you. 

 

Rachel now feels supported at home as her community psychiatric nurse comes to check on her.

So I just kept working, but periodically I’d go into hospital and I’d have about six months off work. So it was very stressful keep becoming unwell, get better, keep becoming unwell, get better. 

 

So it was really, really hard work and I now feel a lot more relaxed and people say that I am a lot more relaxed, but one of the reasons is, is that not that I was non compliant but sometimes you start to get high and you’d feel better and may be you weren’t as organised with your medication and things like that where now they bring it to my house, and they bring it to my house every three weeks in blister packs and the other thing is that is I’m monitored. Because she comes to my house, my CPN every three weeks, that means that, you know, whereas before with other times in [name of place] and [name of place] where it was very busy you had to go to them. If you became slightly unwell, you would end up missing appointments because you felt unwell, so you didn’t go. If I feel unwell at home, there’s a knock on the door, and I just open the door and there she is and just, “How are you.” And I say, “I’m not very well.” you know, and it’s a completely different set up. And that’s only from being in [name of place] where services are very good. So it really is a post card lottery as to where you live as to what standard of care you get. Which is quite amazingly different to be honest. And when I was unwell up here, they got the crisis team and they used to come out to me, including weekends, and they come out to me every day for at least a couple of weeks until I felt better to do without them. 

 

Rachel went to a school where she was hit, but then had more fun in the sixth form because there...

I wonder if you could start off by telling me what life was like before you had any contact at all with mental health services?

 

Well I didn’t have contact until I was 19 and that was when my parents split up. So that seems to have been the trigger. But before then... people have asked me since what was our childhood like, and looking back I can remember being quite depressed at times, and that was quite funny on reflection so but I had a normal schooling. I went to a convent school and the nuns were aggressive and they hit you, and we had to get the nuns out of the school with my parents help. Because I got hit across the face with a bunch of keys and my Mum had to ring up and the nuns were taken out and we had to write a letter to the Sister Superior France and that was when I was about 14, and I still stayed on the school because they were taken over by a school of governors. And that was until I was 16.

 

And then when I was went to sixth form, I went to a mixed sixth form in [name of place] and so we moved and my Dad had come out the army and that was fabulous because it was boys [laughs]. And that was a whole new world. And I didn’t study very much and I did my ‘A’ levels but I had to do retakes. So that was quite hard. 

Rachel had different types of therapy, and found it good to get things out of her system and...

I find talking is a real therapy for me and gets it out of my system and I feel a lot better once I’ve said it, and it kind of, it works for me to, you know, to be able to do that. And I’m sure that for other people that same system of discussing things, you know, is all important and if they’ve got access to it, instead of just being given medication they would find that they, they got better in a different way or quicker or things like that. So, you know, I wish well I hope more people get access to talking therapies and I think that’s a thing there’ll be doing more in the future as well. You know, it will be less medication orientated in the future and more in support. So I’ve been very lucky with that really.

 

The Psychodynamic therapy I just had for a year. And I didn’t take to her as much and she was the second one I saw. And that just flew by a year and yes I didn’t find it very proactive. I didn’t really enjoy that as much. The psychologist I saw, who did a bit of CBT was very good. And in fact, he made me fill a questionnaire out when I started and a questionnaire when I was leaving about how I felt, and it was quite interesting at the end to realise what I’d written at the beginning and how much better I’d got which showed, and I was with him only for nine months, but it was very effective. So that was really good. So that really worked yes.

Rachel read up about her diagnosis and fought for what she was entitled to in terms of benefits,...

I think what I did was when I got diagnosed was I made sure that I read up about it. And I made sure that since being ill I’ve always read all my notes, and that can be really interesting. The other thing is make sure you get what you’re entitled to in terms of support. And I’ve made sure that I’ve got DLA, Incapacity Benefit, Income Support, Direct Payments, anything I could access, I made sure I got what I was entitled to. And with talking therapies as well, I’ve pushed for in the past. And I’ve got it, and so I’ve fought the system if you like to make sure that I’ve, you know, that I have got everything going that I could possibly get to make myself as best as well, to the best of my ability. And I think that’s the most important thing I can say about that really.

Rachel feels guilty that she cannot look after her son and wonders how she might feel better...

One of the nicest techniques my psychologist taught me was the compassionate friend. Have you heard of that?

 

Yes. But say a bit about it?

 

Yes, I will do, it’s lovely. Because I’d go in and I’d feel awful and I’d feel very guilty about not looking after my son properly and I would have been down, and I wouldn’t have had much energy so I would have confessed that I hadn’t taken him out enough or done enough with him and things like that. And my psychologist would say, “What would a compassionate friend say?” And I would always come up with the same answer and that was quite strange actually. I would say, “I’m doing the best I can at the time.” And it would take the guilt away. It was just giving me permission to do what I do but not feel bad about it, and that was a really good technique and it’s one that I keep now, you know, you’re doing the best you can at the time, you know, and that is, has been really valuable for me. So I’m glad that I’m glad that he taught me that technique. Because it sort of saves you from the upset. And guilt’s quite a big thing when you’ve got a kid I think. 

 

Rachel has used Direct Payments to pay for a support worker who helps around the house and offers...

I mean I think it’s a shame, because a lot of people haven’t heard of direct payments or… and they’re just trying to bring it into mental health and it’s quite a slow process and I think it would work for a lot of people. I’ve got one friend who’s getting it, and I’ve got another friend who’s applied, but she’s waiting to hear, so we will have to see what happens with that. And it’s been changed now. Called ‘Self Directed Support’ and I helped her fill in the form and it took us an hour. And it’s quite lengthy. It’s a bit like the DLA form about what you have to do, what help you need and what your needs are and things like that. And yes. So that’s the new scheme and I’ll see how it goes for people, but I really recommend the direct payments if you are a person that does suffer a lot from being in hospital to be monitored all the time. I mean my direct payments worker’s never had to make the phone call but she knows the numbers to contact, my Mum and my CPN if I’m showing any signs of becoming unwell. And that can be all sorts of things like overspending and getting up on a high, having lots of energy, you know, talking too much. Things like that to going the other way and being low and not wanting to get out of bed. She does see me have duvet days some days and I refuse to get dressed. She’ll say, “Are you getting dressed today?” I’ll say, “No, I’m having a duvet day.” I don’t bother to get dressed, but I don’t do that very often now. So that’s nice. And she’s very supportive because she’ll help me with things round the house and cleaning and shopping and doing my clothes and things like that because I’ve got lazy-itis which nothing to do with having an illness, it’s purely the fact I’ve had her for a couple of years now and when she first came in, I was quite depressed and she’s helped me through that bad period and now I’m better, I’ve kind of got used to her doing it. So I am treated like a depressed person when I’m actually fine. But there you go. 

 

So I take advantage of that, so it’s really like having a housekeeper. But it’s the company as well that’s the important thing. you know, I know that when I get up, she makes me a cup of tea which is really nice, and she lets herself in the door and shouts up, good morning and I drag myself down and then I spend a couple of hours just talking to her in the morning and that’s how we start off and that’s quite nice. So it’s companionship. 

 

And I think particularly for me because I’m single. I think if I was in a relationship it would be different, and I probably wouldn’t need direct payments, but I don’t like being on my own and so for me it works, and long may it last. I don’t know with the present government what will happen with the funding or things like that but for me it’s really working. So for me it is quite amazing really and I just hope more people can get access to it.