I see her every time I go, which is three months and you also see the consultant. She sees you for about 20 minutes and goes through everything and what’s happened to you and how you are and then the consultant sees you for five minutes well she tells him, you know everything that shes got from you and what they’re gonna do next and it wasn’t like that when I started but it seems to work better because you get longer you know with somebody, where as you only didn’t have so long with the consultant, where as the system as it, it’s now I think it’s better because theres more involved and it’s sort of she sort of examines you every time you go, whereas the consultant didn’t, he just talked to you and, but I think it works, it’s better.
And you feel able to talk to the staff either the nurse or the consultant?
Oh yes, no I mean they’re very nice. I don’t have any problems with the, you know, very approachable and ask what you want and you get an answer, you know.

Yeah. And, so do you see the specialist nurse on a regular basis or’?

Yes, I, I tend to see her every 3 months so realistically if I’m seeing my consultant every 6 months, I’ll see her in between. So I’m, you know, I, I either see one or t’other. Although the way my appointments are at the moment I’ve got a consultancy appointment and one to see her within a week of each other which I know I’m not going to keep both of those, I will speak to her to, to, to move it into a sensible time frame.

But I have access to a help-line all the time. I’ve, I mean I was at the hospital for something else and I was due a depo injection and I just happened to mention it to the clinical nurse practitioner and I was told, ‘No you don’t need a GP appointment, you don’t need to go and see them. I’m in clinic the same day as you’re up, just come in. And I was fitted in between and no frills or flowers, or we didn’t I think we spent, said about 6 words to each other and I had the injection without my notes being available but I didn’t have to wait around while they got my notes.

So when I saw my consultant, he was aware that I’d been there 3 weeks before and it was all in my records, were all up to date and everything was sorted on that. You know, so that was quite nice to have that rapport there. It’s like an extra safety net almost.

The breathing crept up and I actually was ringing the help-line for something totally unrelated and I’d just walked up three flights of stairs into my flat and when I actually got, got into the flat my phone was ringing and it was the clinical nurse practitioner and she said, ‘You’re wheezing really badly. I said, ‘Oh yeah, I wanted to talk to you about that. She said, ‘When did that come on?’ I said, ‘Well yesterday, it was after I’d taken my methotrexate. She went, ‘Right, that’s it, don’t take any more. But I had, that ca, phone call was Friday afternoon two oclock. She rung me back at 3 oclock confirming a 9 oclock Monday morning appointment. I saw my consultant, I had chest x-rays on Monday.

In fact one of the things that we’re doing in the charity is we’re working with doctors and other patient groups to evolve and create standards of care for rheumatoid arthritis and inflammatory arthritis for the UK because there is no NHS, sorry, there is no NSF, National Service Framework, for rheumatoid arthritis and so we are effectively trying to create an equivalent if you like because the, the different standards of, of care and delivery of service that you get across the country in different areas is quite disparate so we felt this was a, a very necessary a very necessary thing to do.

We had to put down what do we think is a reasonable period for an urgent follow up. So if you are having a flare and you do need to get to your consultant for some treatment, what’s reasonable? We’ve put a month down because the doctor that we were working with at the, at the time, I said ‘A week and he said ‘A week, you’re joking’, you know ‘A month.

But if you’re having a really bad flare, being told that you’ve got to wait a month before you can see anybody or you can get a Depo-Medrone injection or something like that, it’s, it’s totally unacceptable from a patient perspective so these are difficult questions and I don’t know that there is actually an acceptable answer as far as patients are concerned.

This is one of the reasons why devolving some of the decision-making processes into the nurse practitioner’s hands and getting that out into the community in the way that they’ve done in certain areas. For example, in one of the areas in, in the UK they have outreach clinics that one of the clinical nurse specialists does in the community and that works really well because she can prescribe, she can alter people’s dosages and drugs and so on, she can even refer to an orthopaedic surgeon, without having to go back to the consultant.

Now that’s what we patients need because you can ring a nurse up and, you know, get yourself slotted in to a nurse clinic probably a lot more easily than you can get to see the consultant. So that would be great if we could get that model replicated and going in lots of other areas.

The ones for your ankles and what have you are good as well, and I’ve been, I’ve had me mould, me inner soles done on me shoes and things like to build, to build the arches up, push your arches up to make it a bit more comfortable, so they’re pretty good as well like. And you can always renew them, you just have to, you just have to phone them up again right like, and if, if you need anymore you just get it there and then like so it’s pretty good.

You don’t have to go through your consultant again?

No you can just, you can just actually ring them up and especially for the inner soles for the feet, just get another appointment they measure you, measure it all up again like right, see how if your foot’s changed shape or anything like that and then get them remoulded and what have you and they’re pretty good.
And you wear those in your own shoes?

That’s right yeah, yeah. I did have a bit of a problem with them though because it tended to make it even more painful, but they, they modified them and it’s not so bad now, it’s pretty good.
Do you have any trouble finding shoes that are comfortable?

I have done in the past because they tend to be, especially me right ankle like tends to push the boot, when you look at me shoes or me boots well the actual right one, all the leather seems to be pushed, it’s the way, the way the joint’s moved, so it’s you know what I mean, it’s a bit, it’s a bit of a bind sometimes trying to get your shoes to fit you properly, especially when your feet swell up and the way your actual joint’s moved and changed shape is a bit of a, bit of a bind at times but generally it’s not bad.

Yes, I have, I have seen the orthotics department. And I have an appointment coming up to see them again. The first time I saw them it was because I find it difficult to find shoes that fit. And a particular problem with, with slip on shoes that I can wear around the house because I can’t reach to do up shoes so I have to find something that’s both comfortable but, but slip on as well.

The first time I went they, they took a plaster cast of my lower leg and foot, took all sorts of measurements and said they would make me a pair of shoes, outdoor shoes, which they did but they were a bit disappointing because I went back for a fitting and they were, they didn’t fit very well. They were tight and, and they were too short and they changed them again and I went back and they, they seemed a bit better but they didn’t seem that comfortable.

I brought them away with me but I haven’t really worn them because they’re not actually, they’re not actually that good a fi; which was a bit of a disappointment as they actually had a plaster cast of my feet to make them round. I, I can’t really understand that.

I’ve been back since then with the problem of, of shoes in, in the house because my right foot doesn’t fit very well onto, onto shoes and my heel tends to come off the back of the, the slip on shoes and not actually fit properly onto it. And to begin with the lady that I spoke to said they couldn’t help me at all with that, that they only, they only make proper lace up or velcroed up shoes, supporting shoes that they couldn’t give me any help with slip on shoes because the, you know they’re not considered proper footwear;

And so I persisted and tried to explain that I’m actually stuck with slip on shoes that I can’t actually get up in the middle of the night for instance and put on a pair of lace up or velcroed shoes to go to the bathroom and I persisted long enough for her to call her superior in, the head of the department in and he took one look at my slip on shoes and said ‘Yes that’s no problem. We can cut them here, we can do this and we can get them to fit and they’ll be ready in two weeks’ time. So my, my persistence paid off .

Anyway, I’ve got to go back and see them again about the same subject, something to wear around the house. Also I have a lot of pain under my feet because of the changes to the bones. Theres pressure on, on the soles of my feet. So I have a chiropodist come to help with that but it’s quite a problem so the rheumatologist last time I saw him suggested that the orthotics department might be able to come up with an insole that could go in a, in my shoes to ease the pressure off. And he made sure that he put in the letter that it was to go on, in a, in a slip on shoe not, not in a proper lace up shoe. So, [laughs].

I see a podiatrist as well as sort of that kind of a department. I’ve got the shoes on at this moment, I do wea; insoles in some of my sort of trainers and things like that, but these particular pair of shoes are hospital type shoes, with a special insole and I’m obviously looked after quite well that way and that was a, a huge help, a huge help really in a way;

I been sort of suffering quite, quite badly with the fee; for a number of years really before somebody at one of the clinic; I was asked if I, I was attending that particular type of clinic and I said I wasn’t and I was quickly put there and it’s been a huge difference. It’s so much nicer. It really is, it’s made a big difference.

I’ve certainly can take sort of my normal shoes if necessary along and have insoles made to sort of suit those, I have to wear at work, protective shoes with sort of steel toe caps and mid-sole protectors as well in case you stand on nails or have any thing drop on your foot as well, so they’ve made insoles for those as well. But they’re very heavy so I’ve got these purpose made shoes which are very light but have also got the ability to take the insole within like the sole of the shoe and yes it’s make a huge, huge difference;

So what does the podiatrist do for you?
She helps me with the soles of my feet more than anything else. I’ve, I’ve lost the protective coating around the joints on the toes so I’m actually sort of really walking on the bones and that then produces hard skin where you’re putting more pressure on that sort of that, that point. So she looks after the hard skin and the sort of callouses etc that occur from that so that’s really nice, it’s really, really good. You certainly know when you’re getting towards the end of your six-week period and you certainly need to go and see her. And it’s like, it’s like a new pair of feet when you come out, it really makes a tremendous difference.

And as I say the thing with my feet, you know, the podiatrist, it’s worth a million pounds sort of thing when you come out of it, the way, you know, the way it really does make you feel it’s so, so different, so, so different. And it makes you wonder at times how you, you survived before without having that done in a way, ‘cos I did go for quite a period of years with, without really perhaps that being sort of spotted or perhaps without me, myself sort of making that an issue. But now I know obviously that it’s there and I can see the benefits of it, I mean, if you had to pay for it, then you would. It really is something not to miss out on;

Oh it’s pretty dismal at the moment. I’ve been waiting since February. The rheumatologist said, ‘You must have some new boots’, and I said, ‘All right. And so the fitter only comes to the hospital one day a week and they were without a fitter for about three weeks and then I, I’ve never yet seen the same fitter twice. I went to see him and I had my feet measured and that was all right and it was the same last number as the pair before, so that was all right. In, that was in February, March. In June I got a notification to say my boots were ready so I went down and collected them and I have to take them to the chiropody school because they fit the in-soles in them.

And they made these in-soles which took two more visits to the chiropody school and when [laughs] when the tutor said to me, ‘Now we’ll put your boots on and see how they feel with you walking’, I was like Mr Hopalong. Down on one side, up on the next. Down on one side up on the next. And no, nobody had noticed until I’d put those boots on and walked in them that they’d forgotten to put the cork like in-sole thing in. So I was ‘ inch lower with the right boot than I was with the left one. So they’ve had to go back to the makers’ again and they decided because I had trouble tying the laces with my fingers they would put those strip things across.
Velcro.
Velcro fastenings. They put three on one boot and two on the other and I, they were so tough I couldn’t get them across to do them up. So that was another fault that had to be. Now I’m supposed to go next week to see the fitter. If it had been on a Thursday I wouldn’t have seen you [laughs] because you only see him when he’s, he’s like the invisible fairy, you know. I did say to one person in the office, the last time I went, ‘Are we going to get a permanent fitter?’ And she said, ‘We’ve been trying but they’re so scarce on the ground and of course it’s holiday time too. But so that was the story of my latest pair of boots.