Managing patients with complex needs – a patient’s experience

This is the transcript of an interview with a patient of the Primary Care Psychotherapy Service in Hackney and complements the evaluation of the service we carried out.

Q: The first thing I wanted to ask you was if you could describe briefly what led you to seeking help from PCPCS.

A: I had a lot of issues from when I was very young… I’ve had very bad issues for years and years. I get fed up because I’ve had brittle asthma for years and then about a year ago, I had thrombosis in the bowel as well as the brittle asthma and I had haemorrhaging and thrombosis so they found out I had fibrillation of the heart.

Q: Fibrillation of the heart?

A: Yeah and that was a blood clot in my bowel so I’m on morphine for life.

Q: So some quite serious and potentially life threatening conditions?

A: Yeah, absolutely yeah I nearly died about 5 years ago. I was in hospital 3 years, they starved me but bless them they got me back. Then I’ve been on long term steroids for my brittle asthma which is very bad. That I’ve been in and out of hospital for, oh God, I could say 3/4 months a year for years and years. And then I’ve had long term steroids besides the pumps, antibiotics. I multi fractured my back. Literally multi fractured it. That is only a couple of months ago. GP sent me to Homerton and I got a few more at the back but that’s cool I’m kind of handling it all now. Not really, no, I am in pain but I put on a front. When at home, that’s when I….

Q: That’s when you show it?

A: Oh yeah very sad

Q: It comes out.

A: Yeah

Q: You also said, since you mention the emotional impact of your illnesses and the long term conditions that you’ve had. I know before you came to our service you’d had some years of counselling and psychological help and I wondered if you could explain a little bit about what your experience was of using the psychotherapy consultation service…

A: Most of my life I’ve had so many counsellors… For many years I’ve been a yes woman. I was scared to say anything to anyone, I might hurt them. I would suffer, they cannot abuse me, I’m not an idiot, but I am very soft. I feel really proud that I am very very assertive now, not rude, I’m not aggressive I don’t get angry. I learnt that, that’s amazing and it’s took me all my life and to have met you to kind of get assertive… My daughter’s 36 now. Anyway me and her had issues and I think I must have cried years and years and years and moaned about it too my neighbours… I honestly can say yeah I miss them, I miss them badly, but you know what I’m thinking, I’ve done enough crying… You didn’t say like ‘let her be’, but this is to me what I’ve learnt and sorted all out myself. I can get on in life now. I have to think about myself and about my illnesses because no one else does.

Q: What about your brittle asthma? It is unpredictable it can be very debilitating and frightening when it gets bad.

A: Oh it’s terrible

Q: Have you seen any impact on that during the time of your psychotherapy, do you think there is any relationship between your emotional life and your physical health?

A: Yeah 100% I do have to say that yeah 100% I used to be in hospital every 3 months, it was stress because of my daughter, it’s more like me begging them to see me. I had a problem with my mum many years ago…. I didn’t used to stop crying when I talked about her, see how brilliant you’ve been, I couldn’t speak about my mum (before). My mum, you know, we didn’t get on. I used to try and beg her to love me, you know, I used to do everything for her. That place is sold now she’s passed away and I just think she had a problem but then my daughter, it’s like begging her to like me for years and years.

Q: As we are talking about it, are you seeing the similarities again?

A: Yeah, I ain’t even cried

Q: Which you’re surprised about?

A: Of course I’m surprised. I mean it’s hurting me now but I don’t know why I’m not crying. Maybe because she believed me. You see I don’t think you know how much you have learnt me. I really do say that I’m telling you. You really don’t know. Of course I’ve still got sadness about my daughter and stuff but not where it takes over my life.

Q: You’re saying that you used to go into hospital every 3 months.

A: I used to go in every 3 months for years. No that means years when I had stress with my daughter, stress, like I say stress and I say it’s when I get colds and pneumonia. I’ve had no stress now because I ain’t seen her for a year bless her but I’ve had no stress for one year. I ain’t been in hospital except 2 months ago when I had really bad pneumonia. Only when I get bad colds I end up in hospital, but not so much with the stress, like I used to be. Only I realise now from you yeah it was, it was the stress. If I get any stress then I’m in there yeah definitely.

Q: And since you ended the treatment with us a few months ago, have you noticed any of the changes you’re talking about lasting?

A: Yes definitely, assertiveness. I’m never angry, I’m never rude… Years ago before I met you, someone might upset me but instead of saying hey wait a minute don’t speak rude, I’d just go OK then and walk away because I don’t want to upset anyone or I think if I upset them they might not speak to me no more, they might not want to know.

Q: Reject you?

A: Yeah reject me. I had a lot of rejection issues as well. Now I kind of think, you know what, I can’t believe in a few months how I’ve become. Now if he don’t want to speak to me now I’d say well it’s your problem, I seem to be kind of stronger in myself on that area, but like I said I’ve still got my issues with my daughter but they’re in my heart, they won’t go, but I kind of controlled it and kind of thought to myself, you know what, why am I begging, she don’t want to know at the moment? But I do say, and I didn’t believe this before, one day she will come see me.

Q: When we spoke a while ago you also said you thought other people had noticed change in you and I don’t know if that’s your GP, your family or friends. What did you mean by that?

A: I go in hospitals on my own, I’m doing everything on my own… I’ve got a friend, bless her, 18 years I’ve known her, she never comes. Do you know what, I was going in for heart surgery, I had major open heart surgery last week, my friend she came, she took a day off work, she came to me she said ‘I’m gonna take you to pre-admission and then into intensive care’ where I’ve got to be for a couple of days. I’m shocked and then she said to me, ‘when you go through open heart surgery I’m gonna come with you when you first go in’ and I am so shocked.

Q: Why are you shocked?

A: Well I’m shocked because I’ve known her 18 years she’s kind of been very very selfish, I think, so well maybe I am because she was, if you see what I mean. You know maybe she couldn’t tell me things and I couldn’t tell her things. But I can tell her things what I think now and she’s so like, she takes it, she’s really soft with me about it. She’s softer now.

Q: You seem to be suggesting that she has changed in her attitude toward you.

A: Because I have, I know I have, and it’s not just her. There’s quite a few people that’s changed with me and I kind of love this assertiveness I’ve got and I do believe if I do come back with my daughter, please God one day, I’ll be stronger and you know what I think if I was like I was today she would still be seeing me now. I really do believe it because I believe that if you are really vulnerable all walks of life they will, totally, take advantage. It’s life. I’m so proud of my assertiveness though, I really am.

Q: So in terms of you talking about feeling more assertive, having more balanced relationships with friends and some health improvements but you also continue to have serious long term conditions. Do you think that the emotional development that you are talking about make it any more bearable to live with long term conditions and if so in what way?

A: Yes, because I feel stronger in myself because like all my illnesses, I’ve got really bad multiple illnesses. You wouldn’t think anything’s wrong as they tell me you don’t know me, but yeah.

Q: Just to confirm these are very real physical illnesses that have been backed up by testing, we’re not talking about medically unexplained symptoms. One of the things you have sort of said is that anxiety can provoke asthma and inflame it.

A: 100% any stress, any worry, 100% now I know. I do say stress from my past.

Q: And without going into enormous detail there was a lot of bad treatment in your past. Violence and neglect.

A: Yeah from my mum and in my marriage. I married my ex-husband 30 odd years ago. I left my family to marry him, I was married 3 months and he used to beat me up for years and years like my mum.

Q: She was violent?

A: Oh God very violent.

Q: And emotionally cold with you?

A: Yeah very cold, but I think she had a problem. Now I can say she used to…keep me in the bedroom Friday night and not let me out till Monday till I worked. She used to bring my food up there. I do believe though, looking at now as I am, if I do say that to myself at home if my mum had the specialists that we had today. I’m not saying she’d have stopped hitting me, we don’t know that… I have to say though some women have got a pattern: you’ve been abused and you go into abuse. I left the guy after 9 years only because he was cold when I was ill. I’ve been on my own 5 years but I will not go out with anyone. I like company, I like people, but I will not go out with anyone just for the sake of it. Any violence I’m out that’s one good strong point about me, I’m out.

Q: It sounds as if you’re saying you’ve learnt something as well.

A: Big time I’ve learnt

Q: Because it can’t be easy to see what’s someone’s going to be like always.

A: No, no way but, you know what, I’ll watch some kinds of people, I don’t study them but I think once you’ve been there you can see the traits.

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