- Age at interview:
- Roger is a mini-bus driver, widowed, with 5 adult children. Ethnic background/nationality' White British.
Difficulties with co-ordination, I think sometimes it was different professionals' inability to identify whose responsibility certain areas were. The GP saying, 'This should be done through the hospital'. The hospital saying 'This should be done through the GP or this should be done through the community or I haven't got this community individual yet'. But there were fortunately people who were prepared to pick up the phone and do things perhaps outside of the protocols.
I had difficulties in the early days when we had the oxygen concentrator and bottled oxygen here. There were times when we ran out of oxygen and I couldn't get oxygen cylinders. And I thought well I'll make one more call before I ring 999 and say, 'I need oxygen,' and that call once or twice was actually to the GP and the GP would and did always manage from somewhere to get the oxygen. Where it's, some of it's come from I do not know. In fact I've still got two oxygen bottles now and I can't return them from whence they came. One of them is full. Nobody seems to want to claim responsibility for them. But that can be typical in some instances.
When MNDA brought in the speech therapist, the hospital had attempted to do that but that line of communication, their, the people whom they communicated with didn't communicate on, there was a breakdown. It's not the hospital, within the community services. Their liaison point wasn't liaising with the right point allegedly and MNDA identified that problem and knew how to short-circuit it. When the occupational therapist, sorry when the speech therapist got involved he actually went and poked one or two people in occupational therapy.
But the communications within the community were bad. As I said we wanted community physiotherapy in August and got it in January a week or so before she died, far too long, far too long. And when the physiotherapist came to this door and got an explosion. She in actual fact had not been, had only just received a communication. It wasn't her fault. So what had happened in the pipeline and why the pipeline was so long and tortuous I do not know.
But the community, the co-ordination between community services is poor and who to talk to about community service is poor. The needs, the need is for a central co-ordinating clearing point. I need oxygen, I need to get some more tablets, I need something to lift the settee up so she can sit down. I need knives and forks with big handles on them. I need some incontinence pads. I want one telephone number, one point of contact and even if they are not the people responsible for doing or providing that service they are, should then be ones that know who is.
They should, I saw my job as taking care of Teresa's needs, being her representative, being her mouthpiece as well as her partner and everything else. I spent far too long as a medical secretary ringing people who didn't know what I was talking about. And saying, 'Well I've just spoken to so and so and they suggested that maybe you can help or suggest somebody that might be able to help.' Too many phone calls, e-mails whatever trying to find who was the right person, who owned the particular problem. Not helped by the fact that while Teresa's care was under one hospital it was actually being carried out and administered across four others, it didn't help. Didn't help at all.
- Age at interview:
- Age at diagnosis:
- Naomi is a psychologist. She has three daughters and lives with her partner. White British.
And at what point did they tell you that that’s what you’d had?
Oh not for ages. Actually it was just mentioned in passing. It wasn’t you have Ogilvie’s or you had Ogilvie’s or however you say it. It was somebody just mentioned it, and I thought, oh is that what it was, you know, rather than, saying, this is what it were.
And that fact, that kind of understanding of how serious it was, who explained that to you and when was that explained? Was that something you’ve worked out by yourself?
I’ve worked it out by myself. And by the fact that they basically were dancing around me afterwards and I went and read my notes last year, which did actually help. And I can’t fault them for that actually. Then I was like, “Oh there’s too much stuff there.” And she was like, “No I’m going through it bit by bit.” And they did. It felt like they were doing nothing. But they were doing something. But obviously that wasn’t communicated to me, and it was, they perceived with the psychiatry thing, they perceived my comment, which was, “I don’t want to be here.” As something completely different, and actually that took me down a different road to completely the way I should have been going. And the fact that now they do all know about it. And there’s books and stuff on it there shows to me how serious it was, but I have just probably worked it out for myself and also people’s with jokey comments. “We don’t ever want to see you back here [laughs] ever again.” Or, the care assistant had been there for all three of mine on the ward, you know, just sort of saying, “Bloody hell woman.” You know [laughs] “It was bad enough with the first, you were a pain in the arse with the second, and a third look at you” [laughs].
So and it did actually help to go back on the ward to read my notes, to face it. Because it sounds silly but I was beginning to want to avoid it. And I know that the best way to face it, is to face it, and they did want, they did say to me, “Do you want us to read your notes somewhere else?” And I said, to them, “No. I want to read it on the ward.” And that, I’m glad that I did that, because that actually made it not so scary. Because it becomes something different in your head.
And who went through your notes with you?
The ward manager.
So you’d recommend that?
Oh yes. But not straight away. And I mean I went through, when I was, after I had [second daughter] I was trying to decide whether to have a VBAC and I went through… after I had [daughter], I went through my notes quite straight away, because I was told that’s what you do. And it traumatised me more, because there was yet more dates of birth and they’d got the dates of birth wrong because the clocks had gone forward, the hours of her birth, it was all… and I, so I felt that bad I just didn’t know when she was born, how much she weighed or anything. Ask me how much the other two weighed and I couldn’t tell you but for some reason it was important for the first. And it was the wrong thing to do.
Then I went through them again with different people who weren’t involved and realised actually I could have had a natural birth if they’d held their nerve, but they weren’t going to hold their nerve with me. And hindsight I suppose is a good thing. And it could have a different outcome I supp
- Age at interview:
- Age at diagnosis:
- Mandy is a marketing officer, married with one son. White British.
And tell me about the follow up. You said you had your six week follow up with the consultant?
Was that helpful?
That was very helpful. Again [son] was fine. So that was not a problem. It was very useful, because what we did we went through what had happened. He felt that was very important as well. Which, you know, again very thankful for that and he was very open. He wasn’t my original consultant. They moved me from my original consultant to him. I suppose because they felt may be, you know, not that my original consultant let me down in any way and we certainly haven’t said that in any shape or form. It’s just one of those things. But they made the decision to swap consultants and I’m very pleased because he’s the one that saw me through it all.
But what was great about that was that I, I had questions. Because I’d had the six weeks to reflect on that. It was, you know, I made notes and I went in and we chatted. [husband] came in as well. Because again, I thought he needed to, if there was anything he wanted to say this was the time to try and sort it. And that’s when, you know, my consultant said, “Look you can call me at any point.” You know, “Even if its years down the line, you call me. And we can go through stuff.”
I got my maternity notes about four years ago. So [son] was about two at the time. Number one for my study, and what I realised was when I went through the birth essay I was doing. I can remember a lot, and I can also, because [husband] was there a lot of the time he obviously then fed into part of the jigsaw I suppose. But I what I found very interesting about the notes is even though I did see them before I left the hospital, they were very kind, and you know, there was parts of it that they left with me, just to go through. It was good to see it again. And even though, the event was obviously quite traumatic and distressing and depressing at the time. It makes it more personal.
So that for me that’s really reassuring. So emotionally that really helps to, you know, I’m sure things will crop up in the future. But at the moment, it feels you know, we understand it, and it’s not a problem.