Did you find the GP helpful?

Very helpful indeed, yeah. He hes actually an asthma sufferer himself.

And he explained hes got two kids and they’re the same, two young fellas, but hes also reassuring at the same time, in that I am now twenty five and himself was only diagnosed when he was twenty five and again, an active man, keeps himself fit and he just explained how it hasn’t hampered his life, hes had it for, I don’t know, I’m guessing, thirty years, going by his age and he hasn’t let it affect his life. You know, he takes it in the morning. He forgets about it and he gets on with it.

He stays fit and healthy; it’s again, positive mindset.

I think sometimes were too shy of advertising the negative side of things.

Okay.

Because we don’t want to upset people. And therefore we are too willing to mollycoddle to put people into cotton wool areas, and much as I don’t want to upset anyone and to scare them, I don’t want to not shy away from the seriousness of it, because until you understand and appreciate the seriousness will you take it seriously, and actually respect it? And that’s my worry, that’s my concern. No I don’t want to be a fear monger and put the fear, not unnecessarily but you have to have a happy medium of healthy respect of the illness you have. How to deal with it and what you need to do and to take it seriously. Because ultimately in this case it can be fatal.

And were you made aware of that when you were diagnosed with?

No. No. It was, oh you’ve got asthma, every day thing, nothing to worry about, just another ., just another illness and nothing to worry about. Yes. Not fully appreciating how serious it could have been. I’m just very grateful in that time I didn’t time fully take my medications so seriously that I didn’t have what could have been cast as a serious attack, so much so I could have died from, I’m just very lucky that I didn’t.

The other thing that he did that was very helpful to me, although I know that other people have a different view, is that we, we set up a system of sort of telephone consultations So he would be in touch with me probably once a fortnight, once every three weeks, every time he put me on a new inhaler hed ring me two or three weeks later to see how I was getting on. And that worked for me because I was travelling all over the country. So I had consultations with my doctor in coffee breaks during meetings, once when I was on the top a hill in Yorkshire when I was holiday. And that worked really well.

Once or twice when I was really not feeling terribly good he would ask me to go and see him and I would just drop everything and wherever I was and make my way back home and go and see him. As I say, that was helpful.

I would say that it’s really important to listen to your patients. Because they are the experts in how they’re feeling. And to see asthma as more than something that affects our airways. It actually affects us as, as people, it affects our lives. Theres a huge adjustment that you have to make when you’re first diagnosed. I went from seeing myself as a healthy person with no, no health worries and problems at all to somebody who might have an asthma attack tomorrow that they don’t survive.

Or even this afternoon.And that’s a huge adjustment that you have to make. Theres a lot written in the psychological literature about the embodiment of self and so on so I would, I would ask health professionals to talk to us about how it’s affecting us in the round not just how it’s affecting our breathing.

I remember the first time I visited my GP after I had that all diagnosed. I was quite happy, I’m just a person, you know, I’ve got asthma. But as I walked in to his surgery, he was obviously got the old style sort of folder of notes and he got out a stamp. A big red stamp and it had stamped on my notes and it said Asthma’ and I thought that’s my label for the rest of my life. And that was, I was cross about that, because I thought that was insensitive and I don’t think he realised what he was doing because he obviously categorises his patients but he could have done it a little more discretely and [laughs] I mean up to then I just thought well it’s just one of those things. Some people have got diabetes. Other people have got high blood pressure, but this was real, you know, he might have sort of stamped it on my forehead, yes [laughs].

I mean you’ve talked also about your treatment that you had in the beginning, you weren’t really quite au fait with what to do. Did nobody show you how to use the inhalers properly?

Oh no.

So you were just given them and had to work out?

Yes.

They didn’t check that you were?

Yes, yes, and in fact because… I’m part of sort of a group that you know, talks, you know, sort of shares common experiences, I realised oh only in a couple of years ago when a nurse, who has asthma, came and was part of the group and she was demonstrating her inhaler technique and I thought I’m still not doing it quite right. And its, so I thought, I took that away and I thought this is what I do. And it has helped, because I’m starting to reduce the amount of medication I need.

How did they explain asthma to you, your parents, the doctor?

Explaining to me was through the doctor but with my parents there. So obviously they would explain it to them and they, then my parents would explain it to me in an easier way for me to understand. So yeah it was, was. I pretty much understood it from the start.

You had to go to the hospital?

Yeah.

Have you spent time at hospital?

I have when I was really young like, like overnight and stuff. But I have spent a lot of time at, at my age now but not staying in. I have just been going back quite a lot when I, I like, seeing consultants and stuff like that about what I need to be doing. But no, I haven’t been staying in a lot now compared to when I used to when I was a lot younger.

So you have been seeing consultants quite regularly?

Yeah I have been quite recently. About in the last two years I’ve seen, I’ve been at the hospital a few times. That’s, that’s with my asthma and my allergies trying find out what new allergies I’m getting and if theres any new medication I can go on for my asthma and just basically trying to make things better really.

You go with your mum or you go with your parents?

Yeah, yeah I go with my mum.

Do they talk to you now or they talk to your parents?

They talk to me now. They have done since I was about thirteen, something like that. Just, I think they find now that if they talk straight to the person, like the child, that they are like looking after then they could get through to them better than their parents telling them because maybe they won’t tell you the full story or whatever and maybe they don’t understand themselves so. They tell me now, yeah.

And do you, do you understand their meaning? Do they use easy to understand language?

Yeah compared to what they’ve used in the past when they actually do talk to me their language is a lot easier to understand than when they’re using like a lot of big words which are really hard to understand.

When you see, when you have your consultation are they interested in, in your life, I mean in your schooling, your friends? Do they ask questions about that.

Yeah, yeah and I think that’s how they get through to you more because they don’t talk about what you’ve got so much. They, they talk about like what’s going on in your life and they use that to explain what you’ve got basically. So like if they ask me about sport then they can use that to help explain how my asthma is going to affect that. So that’s just a bit, an easier way of actually explaining what’s going on.

We have a dedicated asthma nurse and you’re called in every year for a check up.

Has that always been the case or is that a relatively new thing?

That’s a relatively new thing.

Hmhm. And does that make a big, a difference, having somebody that you actually go and see who’s specialised in…

…Yes.

… asthma?

Yes. You know, GPs can’t know everything. My, one of my doctors actually has asthma so she understands. But in general they, they would not have that understanding. They can have a surface understanding of many things and they have things in which they’re interested and have a greater understanding. But, you know, I just don’t expect them to know everything. But an asthma nurse, yes I do expect her to know everything.

Where they don’t have an asthma nurse. It’s as I said earlier, you know, doctors can’t do everything, they can’t know about everything but where you have a dedicated asthma nurse it has got to be much better. But, but I, I have heard of people just sort of being given their medication and told, you know, like – that’s it.

In a GP practice usually the patient may go and see the GP initially but then be referred to see the Asthma Nurse or a specialist nurse. What is her/his role? How does that fit in to the general system?

These days practice nurses often specialise in lots of different long term conditions and if the practice nurse has got specialist knowledge in asthma then they are often able to manage the patient’s asthma long term. So practice nurses will often be more expert in assessing inhaler technique, assessing whether somebody is on appropriate treatment, to give lifestyle advice, help draw up self-management plans and generally monitor the asthma and be able to advise the person with asthma under any special circumstances they might come across. So if they are wanting to go on holiday abroad and wondering what they should do about their asthma, can they take backup medication, then the practice nurse is often the best person to go and ask about that.

Does every practice have a specialised asthma-assigned nurse or not?

Not necessarily some practices will have practice nurses who have some knowledge around asthma and may be trained in order to assess inhaler technique but may not have the specialist advice to go on and give further information around self-management. But in many practices now there is often a practice nurse who is more specialised in asthma and is able to give that level of advice.

The main doctor was the senior partner of the group and he was the one who recognised the crackling in the chest and said, Right you’ve got asthma. And then said, Right I can’t prescribe the medication but next time you see Or he prescribed it. That’s right, he prescribed the preventer and the Salbutamol or Ventolin just to, inhaler to help. And the next time I saw the GP, because I asked for an explanation and she said, Oh because you have to. And she didn’t go into details and I’m the sort of person, I like to understand why I’m taking something. Not just because I have to. I need to understand the reason for it. So it helps me to appreciate the seriousness. And as I said, only through being referred thankfully to an asthma clinic nurse of a different health centre but in the same, in the [local] area, but just a different catchment area, that she actually took forty minutes, she actually took the time to go through to say, Right the blue one is to help you breathe out as and when you get a slightly tight chest, because of the cold weather or whatever, the brown one, or the orange, or whatever the preventer is to actually control and maintain control, so even when you feel okay on a good day you still need to take it, because it’s like floodwater, the barrier rising, it’s the barrier to maintain it, to keep it, so whilst you’re not feeling troubled by it, it doesn’t mean to say it won’t get worse. So with the preventer it helps to keep it under a level that’s controllable, and obviously she also did the asthma, asthma plan which was extremely helpful. And understanding that you know there is a, with your 550, 500 which is the peak flow that I have. That’s fine, it’s nothing to worry about, it’s really good, but if it goes down to 300, 330 then you know that’s serious and it’s not, no, do not hesitate, you call the paramedic or you take yourself to A & E because, if you can do, if you’re not too breathless because then it’s a serious level and its dropped too low for you to be able to manage properly.

And you talked early about the fact that people should go for regular reviews. How regular and what happens at a review?

Ideally asthmatics should go for a review at least once a year and in addition to that should go and be reviewed at their practice if they have ever had an admission to hospital with their asthma or if they’ve had an exacerbation or a flare up of their asthma. So their asthma should be reviewed after that time to see whether or not the treatment that they were on prior to that flare up was appropriate. So the reviews can be more often than a year but at a very minimum asthma should be reviewed on an annual basis.

At the review the nurse or the doctor who is carrying out the review should review whether the patient is on appropriate medication, whether they are taking their medication appropriately. So have they got good inhaler technique? Have they had many flare ups that year. So is there any idea that they might need their asthma treatment stepping up but also looking at whether their asthma has been well controlled over that time and if their asthma has been very well controlled and they are on a high level of treatment could the treatment be stepped down. And so they may advise that under very well controlled asthma that the treatment is reduced. In those circumstances we would often recommend that the treatment is reduced and then reviewed again three months later to ensure that it hasn’t then set the asthma back out of control again.

I’ve gone to see the nurse. I try and see her every six months so that she can monitor it. Because that was only, I was only told about that about three years ago or something. And so I went to see her the first time and I’d never been monitored in that way before. And so I had the, I was given the peak flow measure and the chart to plot, you know with the graph that you can plot your measurement on. And then yeah I’ve seen her again since. And she, she was really good actually because she explained exactly how it happened. And she had the models of your airways and she could show you what happens when they’re swollen and exactly why people are asthmatic in the first place which was interesting actually to hear.

Did you know that beforehand or not?

I think I did but it was. I’d never been told by a doctor or anybody. I probably read it somewhere but I’d never been told by a professional and been able to talk about it in that way.

So she was the first health professional that

Yeah other than, other than my doctor who had given me the inhalers in the first place and talked to me about that. But she was good cause you know I was solely there to talk about my asthma. And so I was there for about 40 minutes or something.

So and this is what you do every six months?

Yeah, yeah.

You go and she can keep your asthma under check.

Yeah, yeah that, that’s good that they offer that actually.

Once a year, I go for a full asthma review at my doctor’s surgery.

Is that with an asthma nurse?

Yes, that’s with an asthma nurse. But if I’ve got any queries in regards to my asthma or I just feel my asthma’s not quite right, not quite under control then I can go to the surgery and see an asthma nurse. I just have to ring up and make an appointment. Or I can see a doctor, and they’ll say, Okay well how do you feel? And go through things with me. So it’s quite, my surgery, my doctor’s surgery’s very good for that. They’re very on top of it.

So you feel like you’re being looked after?

Oh definitely. I feel like. I feel more comfortable and feel more looked after now than I did when I was younger. When I was younger I felt I was very much just left to it. Because I never went for what they call an asthma review when I was younger. I didn’t, you know, that just didn’t happen. If my asthma was bad, I went and saw a doctor and they, you know, looked at my inhalers and had a fiddle with them, and off I was packed again you know. But whereas with nowadays because you can pick up the phone and ring your doctors and say, Oh you know, I’m not quite sure. They can make you an appointment for an asthma review or just a check up with somebody to check things out. I feel it can be, it’s looked after a lot better now than what it was when I was younger.

One of the things I’ve learnt is that it’s important to go back regularly to your asthma clinic, even if you think you don’t need to. Mostly because if you don’t know who they are and they don’t know you and you’re not familiar with it, then if you did get into difficulties it, that’s harder for you really.

So probably every six months I would go and phone up and see my asthma clinic. I think they’d like me to come more frequently but I kind of feel that’s okay unless I’m in difficulties.

If you get a, if you’ve gone through a period of having little head colds or you’ve got, I don’t know, viral thing going on, you know, phone the clinic. Normally, they’ll give you advice on the, over the phone because if they know they can do that. Now, this is the thing, if you’re not going to your asthma clinic regularly then you’ve got go and see somebody at that point when in actual fact all you’ve got is a head cold.

But if they know you and they know your norm and you know your norm you can then manage your asthma by, you know, giving them a call and saying, I think I’m going to double up on my Accuhaler. You know, take it, you know, double the dose morning and evening to get you over that period and then you, you know, use your peak flow or use your own judgement until the next time you’re due to go to the asthma clinic

In what circumstances would somebody go to see a respiratory consultant or have out-patient treatment?

There are a number of reasons why somebody might go to a respiratory consultant. It may be that the asthma isn’t well controlled on conventional treatment and we have very good national guidelines that give us a sort of stepwise approach to how we might treat asthma. And if we are not under control at one step then we step up to the next level of treatment. And often once weve stepped up to different inhaled devices and using maybe one or two different drugs in an inhaler and somebody is still not controlled then they may then get referred to a respiratory consultant for advice over whether we want to add in maybe some tablet therapy. Some people in the community, you might have a GP who has got a special interest in asthma or a practice nurse who has done more asthma training who would be confident to step people up a little bit further. But very often there comes a point where somebody will say, Actually I am not getting good control over the asthma at this stage so I want further specialist advice. So that would be one reason why we might refer somebody. It may be that somebody is having lots and lots of flare ups and having frequent courses of steroid tablets, possibly even every time they come off the steroids having another flare up and needing to go back on the steroid. And again that would be another time where somebody might be referred for some specialist advice to see a respiratory consultant.

And then there are people who have very severe asthma that is not brought under control by the guideline treatments we have available to us. And there are one or two specialist treatments particularly an injectable treatment called omalizumab (Xolair) which is only available under respiratory consultant control. And that’s only used in people who have very severe, highly allergic asthma where the asthma isn’t controllable under other circumstances and that would be assessed by a respiratory consultant who would possibly ensure that all the other treatments are being used appropriately, that there isn’t something else that is causing the asthma to be poorly controlled before they are then assessed to go on to that level of treatment.

I have other conditions as well. And it becomes a vicious circle, one drug that you might think for asthma is fine, but unless that consultant knows your entire medical history, you’re going to end up at some point with a contraindication. And one drug isn’t going to agree with another drug.

So you, I have found that I’ve had to take my entire life history and all of my medical treatments, all of my consultants at all the different hospitals, you have to carry it with you when you go because you can’t assume that they’re going to know because quite often they don’t. And trying to deal with the different consultants that you meet over time because once you’ve got the condition over a period of years you’re going to meet a lot of different healthcare professionals. And they’re all going to be different. Their ways of doing things are different. Their manners are different. And you’ve got to find a way to build a relationship with them because otherwise I don’t think you always get the care that you should have because they just don’t know you and they don’t connect with you. And unless you’ve got the confidence to tell them how you feel, if you’re happy about taking that kind of medication, how it makes it you feel, they’re not going to know.

And we always assume that doctors should know. And by this point in my life I’m well aware that sometimes they don’t. And that’s not because they’re lacking in skill or expertise, it’s the fact that your condition is constantly changing. Treatment is changing. Medications are changing and it’s a lot I think to expect them to always know. I was always very harsh on consultants when I was younger when it was… well you know, what’s the matter with me, do something about it. Stop me from feeling like a freak, I want to go out. I want to do sports. I want to go to my fiends’ houses and I can’t. And I almost blamed them for not sorting it.

And I know now they can’t sort it. But if you find a good consultant who takes time to find out the impact on your life of that disease, it makes a huge difference.

A huge, huge difference, it means communication is much more open between the two of you. and they can prescribe things better and they understand you better. It’s, it’s a strange relationship and it does take a while. And of course in, especially in the realm of NHS cuts those consultants might not be there next time you go. So you, I think you have to be quite forthright and if you’re not that type of person, I think you suffer as a result.

Would you ever thinking about making an appointment to talk about the psychological aspects of it? So saying, you know, that I’m really worried that in the future this is going to get worse. And, you know, and see what their medical opinion about your condition would be?

Well, I have said that, actually, to my consultant, and he is an awful man, and he said, Well, are you doing anything about your weight, because if your weight was lower. What weight are you? You’re near twelve stone. Well, if you’re two stone of that off, you wouldn’t, your asthma wouldn’t be as bad.

And what are you supposed to do to, because I mean if, presumably, if you do heavy exercise you’ll bring on your asthma.

And then hes giving the steroids that’s making me eat twice as much [laughs]. So it’s

A vicious circle?

Just a vicious circle, and but I have said that to him, and that was his response, you know.

Yeah.

The ladies in the waiting room would be quaking in their boots. They’d be heart scared to go into him, because if he doesn’t pick on you about your weight, he picks on you if you’re a smoker. So I’m not a smoker so I get the weight bit [laughs].

Because I have, my parents, although I live with my parents, and often, well not often, sometimes they’re here when I, when I ring, I’ve previously had respiratory arrest where I stop breathing I’ve only done it once, I’m never doing it again but I also get bad very quickly, I go from sort of coping to not coping and my consultant has said you know, Call an ambulance, he said, because if it happens in a car, your parents are stuffed; if you, if it happens in an ambulance, they’ve got the oxygen, they’ve got the equipment, you know. I mean we were a bit dubious about using the ambulance service down here because we had a bad experience where we used to live, where an ambulance man turned up and basically, you know, inferred that he was not a taxi service, you know, why, you’ve got two cars outside, why couldn’t they take me down? But here they’ve said, No, call an ambulance whenever you need to, and also, when you get to A&E, it’s a lot easier if you go in an ambulance because you bypass reception, you bypass all the people being sick and the people with bleeding hands and things, you know. I mean, the couple of times I have sort of walked in, you know, if I, if mum and dad have taken me down or whatever, they do tend to sort of drop what they’re doing and come and see me, A, because they know me and B, because breathing conditions or breathing problems do get priority. But

Do you think that’s quite helpful, I mean, I know obviously as the, as the years have gone on and you have had more hospital admissions which obviously isn’t what you plan or, or want, but at the same time, I suppose that means that people are, are familiar with your case and you don’t have to keep repeating what’s

Yes.

…what’s happened and going over your story, I suppose.

The, Oh God, it’s you again.

[Laughs]

When you going into A&E; you go in, Oh, hi Jen, how are you? Silly question, you know, I’m going blue round the edges, but and also now I’ve now got a yellow community folder which basically is provided by a community matron and in this folder it’s got my management plan, my drugs, all my history and everything in it so I can just give it to the ambulance men. I don’t have to, you know, they will say, what your date of birth, your address, your phone number or any of that, you just give it to them and say, It’s all in there, you know, all my allergies are in there, contact details of people, everything.

Hm, which is probably helpful on two counts because, first of all you’re not wanting to be able to, to have to speak when you’re feeling quite ill

Yeah.

… but also it just saves you having to go over the whole lot again.

Yeah, it does and also the other thing that I’ve been able to set up since I’ve been down here is I have a management plan written by my consultant because what’s happening was when you go into A&E theres this text book – sorry, I moved, didn’t I?

It’s all right.

[Laughs]

It happens, people do [Laughs].

Theres this, theres this text book protocol of how you mange an asthmatic and over the years weve discovered, trial and error, what works with me and what doesn’t and my consultant’s view is why re-invent the wheel? So I now have it written down. It says, you know, when Jenny turns up in A&E you should have done this, this and this, so you should do this clinically reassess then do this and then reassess and do this, you know, and it’s sort of written, it’s written and it is slightly different to what the text book for the junior doctor says, but it’s what works for me.

And it has helped because, you know, the doctors sort of say, Oh, you come with instructions. Fair enough, just do what it says, it’s fine.

The local paramedic service know me very well, and they say, Oh yes, we know you, don’t worry. The worrying factor is in the frustration, of course you know how fate, you know, unfortunately it can be fatal and you have, I have a tendency to panic, which I try to tell myself, theres no need to panic, you know what you’re doing, you know where you are, you’re safe. But however much you actually tell yourself that. Sometimes you can’t stop yourself from panicking. Which is not good either, because it increases the symptoms, and makes you think you’re getting worse, when you’re not necessarily getting worse.

But thank goodness for the paramedic service in the local East area where I live. They’ve very understanding. Very, very respectful and they still treat me, you know, strict carry on treating me, even though they suspect it could be just a panic attack. They’ll still take me seriously, and that, that means a lot to me, because, you know, to look at me, I don’t have a broken arm, I don’t have something visible to, to say that I’m ill, but they know the symptoms, so now I think I believe they’ve been trained to recognise it more quickly. And to appreciate and also it’s the respect factor. But, you know, I’m saying I’m not well, and don’t be silly woman, you’ve heard people say that to other people and you think, just because they don’t look it, doesn’t mean to say they’re not ill, and that’s, I think is very valuable to have that respect factor involved, and to have people taking you seriously and actually listening to you rather than saying, we know better, were medical professionals. Which has happened in the past I’m afraid. I have actually been in hospital where a nurse has blatantly made a throw away comment, Oh, you have to get rid of your cat. Not wanting to find out first, how I came about with asthma, no, I had the cat before I had the asthma. And therefore she wasn’t the trigger at all. And that really hurt.

Yes.

And its, I mean I know that some people a job is a job rather than a vocation and you can tell those straight away, because the comments they make, throw away comments are very hurtful and not considerate of the person they are thinking about, not really thinking about the person themselves, they’re thinking of well that’s a, like they’re just silly, and they just don’t respect the person for who they are or get to know the background or the lifestyle, because each of us have different lifestyles and it could be that, as she said about the cat, she didn’t find out, take the time to find out, but I had a cat before I had the asthma. So saying a throw away comment like you must get rid of the cat, was just, well very sad really.