she’s totally interested me as a as a case and she will follow-up. As I say, I’m going in to see someone about my prostate gland on Monday, and this is because she’s actually followed-up and sent me there. She’s started me off on tablets. That didn’t that didn’t have any great effect. Then she gave me another tablet but that didn’t work at all like it was supposed to. So she’s actually followed-up and got me an appointment to see a specialist at the [city hospital]. So I’m being looked after again because she has followed the case through. She’s not sort of made me go down there and say, What’s happening? Within, I think it was three days of me going down the last time, I had an appointment an appointment for the [city hospital]. So she’s obviously followed that up and got me there as quick as possible. No, I get looked after very well by my doctor, very, very well and yes, the, if I go there with a problem, she’s only keen and willing to try and sort it out for me, and I feel like it’s a fifty-fifty relationship where I trust her and she will do her best for me.

Could I ask you what your opinion is of the treatment you receive?

I think its fine now. I think, obviously, before I was very ill, I, it bothered me that I had to keep trying to explain myself to more to the doctor, I think, to make her take notice of the fact that I was so ill.

And I didn’t like, at the time, because there was quite a variety of epilepsy doctors I was seeing.

Right.

Whereas now, the consultant, you know, I’ve been seeing him for quite a few years.

So I feel better with him and I, it worries me sometimes that he’ll go and then who will the next one be? But

Right. Okay, so that continuity.

[mm]

Is important?

Yes, I, yeah, I yeah, I find that is that is important now, you know. At one time, when the nurse left, he did think he would be getting a replacement nurse and, of course, that’s just drifted on and he hasn’t got another one. So but as I feel at the moment, seeing him is fine and I did like it when the nurse was there because that was quite a quite a while but, you know, its fine as it is now.

You don’t see the same consultant, I mean I see a different consultant every time I go to the clinic, so you can’t get any connection and sort of carrying on the conversation I had last time, you know. But I suppose that’s the way, you know, nobody’s fault, not the hospital’s, just one of those things. There’s no, what was it, like there is with your GP, you know, whatever you call that? I’ve forgotten the word. Do you know what I mean? Do you understand what I mean or not?

Do you mean there’s no, you can’t go and see the same person each time or?

Yeah, I mean I don’t really, I don’t expect that I should stay with one consultant. I mean there’s no follow on unless the next consultant, different consultant you see can really follow what the previous one I’d seen has written down and know exactly what went on, oh, I’m getting myself in a muddle here but you know what I mean.

Do you mean that things not get missed but they get suggested and then never put into practice or?

Well, I could, now when I go to the diabetic clinic again in June, I could say, Oh, when I saw you in December, you said, you know, you was going, you were going to contact my GP and. And I’d have said, What was the outcome? Did you decide anything between you? But because I don’t think he’ll mention it, I mean there’s no follow on, if you know what I mean.

I’m interested in what you think about your GP, which is something that you’ve already alluded to, and you don’t seem to be very taken with your GP?

No, the GP I normally see only works two days a week, and as a consequence, I think she’s overloaded with older people, cause she’s very careful, and she specialises in diabetes, so I stay with her and she understands things. But, I’ve changed to others, and I’ve not felt confident with them.

So, the fact that she only works these two days a week then, she’s got a lot of patients, it presumably means it’s hard to get to see her when you want to.

Two to three weeks waiting time, no, you can’t get to see her. And the people that they send havewell they don’t send, they don’t send people, it’s a telephone call, what’s the symptoms and we’ll send it to the chemist. Pick the tablets up at the chemist. They don’t see you.

So it’s a really tricky sort of area to be in, you know, and I think that’s similar with the diabetic consultant, not really, but I’ve seen one recently and I don’t tend to see the same consultant for my diabetes, which I wonder if that’s a problem. The benefit I think with the diabetic clinic, it’s at the same hospital with the neurologist, specialist nurse, diabetic specialist nurses again, they’re very approachable.

Right.

And listen and they’ve, I’ve got phone calls from them, you know, phone numbers rather, if I need to call anyone and they were very much available in the early days. And we saw my diabetic consultant recently, again a guy I’ve never met before.

I don’t know what I’ll do. Because, the painthe I’ve got to get something that sorts the pain out, I can’t live with the incapacity and the pain, because I’m on my own. But, it isn’t just that, you know, the treatment will vary according to which diagnosis you go with. The one yesterday is talking about injections into the spine. Well I don’t want to have that done unless I’ve absolutely got to. The one that is in [town], he was talking about some sort of drug therapy which is available. Whereas, the one yesterday was saying, he didn’t seethink I fitted the criteria for the drug therapy. And, I’m thinking, actually I’d quite like you to get together and talk about this and, you know, and decide what is the most appropriate diagnosis, and what is the most appropriate treatment, because I haven’t got the expertise to do that.

So, are you nowyou’ve effectively got two different consultants.

Yeah.

Are you still paying for the private one and you’ve got the NHS one as well?

Yeah. The private one is very good, because, yes, I’m paying for the consultations, but he’s sent me to the [hospital A] for all the bloods, all the x-rays, and the CT, so I haven’t been paying for any of the tests. The ridiculous thing, which absolutely infuriates me, is I deliberately asked thethe medical secretaries if I could have the reports that came from the bloods and the x-rays, so that I could take them with me yesterday. They gave me the written reports, they told me that the [hospital B] could access all of the x-rays, they told me categorically, I asked the specific question. Speak to the guy yesterday at the [hospital B] and he said, no they can’t, they cannot get the x-rays that have been done in [county]. And, I’m thinking, this is absolutely ludicrous, this is ridiculous, why can the NHS not share information about a patient, I don’t get it.

With mine, I think, because I’m seeing…my GP is based in one town.

Yeah.

And my consultant, my psychiatrist, is based in the city.

Right.

Near the city. So, where…it doesn’t always, he says he’s gonna write to my GP, but sometimes, the GP never even gets the letter.

Yeah, yeah.

And I go and chase it up with him, and he says, I’ve never heard, I’ve never heard anything from him last. Which, yeah, it can be a problem, that, yeah. If you’re within the same town, then it’s fine, but if, if it’s a different, if it’s a different city altogether, then, you know, it’s gonna be one problem for you. And to get the message through, is not very easy. I find that, yeah, because it’s…and he sometimes says, I haven’t heard anything, have you got a letter from him. Which, luckily, he sends me a letter, like I’m the GP.

Right, okay.

So I bring a copy in, in case he hasn’t got it. Because he doesn’t always get it, no, which isn’t good.

I’ve always had a good GP, it just so hard to get appointments and things like that, you kind of have to wait a little. But my G I my newest doctor is amazing, she’s very supportive and she if I go in, like, to do with my asthma or my chronic pain she’ll ask me to book an appointment for three weeks’ time to follow up. So there’s a lot of support that’s being given to me through my GP.

The GP practice in itself has been fantastic. If it wasn’t for the GP who sent me for the blood tests, who knows where we would have ended up. And then since then I’ve got pretty good relationship with all the GPs now. There’s one particular GP that I see really I try and see re more regularly than anything else. We normally have a chat and, you know, how are things going, that kind of thing. I saw him a lot when I was first diagnosed. That was the same one who actually phoned me up in the middle of the night, so he kind of… we kind of kept in touch and so I had a few months off work, so he kind of kept in touch while I was off work and was helping me deal with a lot of the emotional stuff of being diagnosed with the tumour first of all, as well as the practical things.

I mean, do you think he had kind of a clinical understanding of this strange condition, or is it a question of, you know, the endocrinologist is the person who deals with all of that, I’m just here, you know, to provide you with general support.

He’s, I know he’s got a special interest in endocrinology

Right.

himself. And so he did seem to understand what was going on and he was able to some degree reassure me that, you know, although it’s a major, life-changing thing, hopefully it shouldn’t be too all-consuming. Although talk about general, general support, we did try and explore several different options for support, things like relaxation therapy and ma or massage therapy, just to try and because I was very, very stressed out when I was first diagnosed. And because it was a strange thing, because it was tumour not cancer, because it didn’t fall under the cancerous tumour, it was a non-cancerous well, whatever the benign it didn’t fall into any category where I could get support. So although I was stressed out, we were struggling here trying to manage, you know, being told you’ve got this tumour, you could be on medication for life, there was actually no support available for us. There was some carer organisations that my partner joined at the time that were fantastic for her. But there was nothing for me, absolutely nothing. I was just kind of left, because it didn’t fall under the right umbrella.

The help that I have had in the last eighteen months to two years, has been great. I can’t fault it really other than, and this I think is happening across the NHS as a broad, in my particular area I wish they would stop rearranging everybody and changing the areas in which CPNs [Community Psychiatric Nurses] work. Because you form a relationship with a CPN and they do become a friend. None of none of the ones I’ve been with have crossed any boundaries but they’ve be, you form that relationship and you start to trust that person and be able to talk to them and open up to them and then, all of a sudden, they’re moved and you’ve got to start again.

That is my only criticism of it. I had a CPN that, the first CPN I ever was allocated was, she never told me what her job role was. She continually, she turned up for every single meeting we had, she was always about half an hour late. When I was admitted into hospital I said that I had no idea what she was supposed to be doing and what, why she was there. They then changed her and I had a really lovely chap, who I was forming a really good relationship with. They then changed, moved everybody around. I was given a new one, who thankfully has stuck with me. She did warn me though that, potentially, by the end of this year, she could have been moved onto a different position but they were still waiting to hear about that. But she had been, she’s been very good.

I was very pleased when I moved here. I don’t mind the fact that you don’t necessarily see the same GP every time because, you know, I mean, I think, if you see GPs who’ve trained over a long period of time you know, older GPs, younger GPs, whatever. The younger ones would have trained more recently, so they might be a bit more up to date. I get on quite well with him, I think he’s a bit wishy washy, he asked me what to do.

My daughter came with me to the last consult with him, because she was absolutely furious about the diagnosis of the ankylosing spondylitis, and the fact that it hadn’t been diagnosed before. And, the man in [town] said he thought I’d had it since I was in my twenties, but, you know, he’s the latest in a long line.

I’ve been to four GP surgeries in my adult life, because I’ve moved, you know, youyou can’t hold GPs responsible, but you do think, if they don’t know, they ought to know a man who does. And, they ought to be quick off the mark about sending somebody, like me maybe, for some sort of expert consult, and they’re not. And, whether that’s financial, whether it’s just reluctant to admit that they don’t know enough, I don’t know, I don’t know what it is.

But theit’s interesting the rheumatologist in [town] said that, one of the things that he gets most cross about, is the fact that rheumatological conditions are very poorly diagnosed by GPs, and GPs don’t refer people. Never mind early enough, they don’t refer people to rheumatologists, and he thinks that’s very bad. Because, if it is ankylosing spondylitis, and I have had it since my twenties, there’s a lot of damage taken place that could have possibly been avoided.

But, it’s too late, it is what it is.

But normally I see I don’t mind seeing any doctors, about eight doctors in this surgery practice. I don’t mind who I see.

Right.

They’re all good so I don’t mind who it is and, of course, they’ve got my record up to see so there’s no problems there.

I don’t think it was I don’t think it was quite enough, because I was I was told on the Friday morning, about half past nine, she said, oh we want you out of the ward today, she said, as quick as that, she said, you’rewe’ve got the bed needed by someone else, who happened to be Portuguese, who didn’t speak English. So I was out, so then I had to make arrangements for someone to pick me up, they didn’t offer an ambulance. And I rang my son, and he had to break his work to come and pick me up, brought me home. But I didn’tthey didn’t have a take home package, tablets, medication, and dressings, so when I came home we weren’t preparedmy wife wasn’t prepared for it. I came home on the Friday, and on the Saturday we were using paper towels as dressings.

I’m trying to work out from the hospital’s perspective, what was the assumption? Was the assumption that you would have gone andto your GP in order to get those supplies, or you would have gone out and bought them for yourself or?

Nothing said, we weren’t given anything, just parcelled off. Justno description. And, um, they weren’t even sure, when I went back in, cause I said to the girl, I don’t feel that you know what you’re doing. She said, we don’t know exactly what’s wrong with you. And I was told it was touch and go, that I survived.

I was, got referred to [hospital]’s you know, rehabilitation team, they organised the physio and I also saw an occupational therapist for a while, and then much later the psychologist. There have been points like with the psychologist where I, you know, I’ve been discharged by them at my own request because I felt I’d said, at that point, as much as I could do.

Right.

But, you know, I’ve been given the option, if ever I need to speak to them again I can I can go back to them.

Right.

And it, yeah, most departments have said that if I do feel, you know, a real need to go back to them I can call but yeah.

And is that okay for you? Is that as you’d like it or are you happy with that or?

Yes, I think I probably am.

I don’t know what I want.

In terms of the care that you get now for your conditions.

Yes.

Which ones do you feel you get the most help with?

I guess the stroke is the dominant one, though I have finished all physiotherapy, all sorts of therapy and what I do on the stroke side of things, is off my own back by going to my trainer maybe once a week. The asthma, I have a check-up, I think it’s every six months and the ulcerative colitis, I go back to [city] once every twelve months and that’s it really. There’s no sort of hands on care as such. It’s just regular check-ups.

Right.

The asthma, obviously, I do the flow meter, flow thing that you blow into and that’s it. On the stroke side, like I say, all therapy is finished.

Okay.

So the on-going care is probably just a courtesy yearly check-up.

And do you have much contact with your with your GP on a routine basis or is it is it as and when or?

It’s as and when I need it really.