Self-management is a fundamental, intrinsic part of asthma. Most of the, asthma is very, very common. We know that it affects probably something like 6 or 7% of the population in the UK and many more children. Self management is absolutely key. People need to know when to increase their treatment, to help them through periods of worsening symptoms. How they deal with acute attacks. And this is why we provide people very often with management plans or action plans, which can be written down, which may be driven by symptoms, changes in symptoms, if they increase by a certain amount, increase your therapy by a certain amount. Or driven by changes in those peak flow readings I mentioned earlier, where if peak flows drop to a certain level then this should be the first step that you should do, may be double your inhaled steroids. If despite that it then drops even further, then go along and see your GP or if you are more severe and you have these to hand, start a course of oral steroids.

And, putting people in charge of their own asthma is very, it’s absolutely fundamental to my view, because it empowers them to take control of their own asthma.

What are the common problems that people find in self managing their own condition?

I think part of it is a fear about whether they’re doing the right thing. I think the second thing is that there are some people who are perhaps slavishly adherent to the, to the guidelines. And I think, but in general terms, I think the one thing that people find more of an issue with self management plans is he sheer phaff of it. Yes, but having said that there, for many, many people self management plans work beautifully. For some it’s just not the thing. And you just have to try and work it out and work in collaboration between the doctor and the patient as to how best their asthma is to be managed. And in the majority of people self management works very well.

I think I was lucky in that when I was first diagnosed I was close to a really good asthma clinic with a really proactive nursing staff, who kind of really made it their business to ensure that you were getting a dose out of the inhaler, which is the other thing at that start, that you’re actually getting a full dose. And they were, I was highly motivated to, because of my experience I was highly motivated to find a way to get this thing under control. And they were willing to talk to me endlessly about it and have any number of phone calls and any number of visits and any number of peak flow meter for the one that I just lost and all that sort of stuff. So I guess that gave me confidence over time but I mean I think that, generally, my experience is that the services attached to your GP clinic for asthma are very proactive.

Very good, yeah.

Okay and at that the start, what did they tell you to do?

To take the dose as prescribed. Read your peak flow. Mornings and evenings, fill it in your diary. Keep that diary consistently for a month and come back and see them in a month and they would then, you know, put you on the I can’t remember the name of the machine that they measure your lung function.

Right.

And then send you away and say, Well, you’re doing okay. That’s fine. Do that for another month and then come back. And then, of course, what happens is you’re fine every month for three months and then they’re getting bored with you and you’re getting bored with them and, yeah, but and I think what they try to do is get you to understand that you have a lot of control and that you can make quite a lot of the decisions for yourself and that they’re in the background then.

I suppose the thing about asthma is, as far as I, well, certainly my experience of it is that you can manage to do an awful lot to not let it escalate into a really serious attack and a serious attack is a big chunk out of your life, you know. You’re going to go into a formal hospital setting. You’re going to be nebulised. You’re maybe going to be given heavy duty steroids. You’ll maybe need all sorts of other help. Your life is going to be on hold until you and you’re going to feel like a wrung out dish cloth afterwards for a week or two. So it really motivates you to kind of try to do everything you can not to let that happen.

That’s always sort of in the back of your head.

It is with me, yeah. I don’t know. I don’t know how common that is but it is with me.

What are asthma care plans or action plans?

Asthma action plans usually are a plan often a written plan that advises the patient on what they should do under normal circumstances with their asthma but also about what to look out for when their asthma is going out of control and what action they should take as a result of that. And they can be very simple plans. If somebody doesn’t feel confident to want to take control of their asthma just with simple advice about the sorts of things to look out for that would suggest that they ought to go and seek advice right through to quite complex plans that give patients lots of information about what they can do in an emergency, when they should start taking their steroids, when they can change their own treatment according to the plan.

One would also expect in the plan to see advice around the sorts of things like prevention of their asthma so avoiding triggers if there are particular triggers that we know are a particular problem to that patient.

Does everybody have an asthma plan or is that optional? How does that work?

In an ideal world that ought to be. Everybody with asthma ought to have an action plan. I truly believe that it’s the way forward for people to understand their asthma is that they have a plan that tells them what they should do under normal circumstances and what they can do to help themselves in the future. But unfortunately not everybody has action plans either because they’ve not been offered one or perhaps because they have been offered one but haven’t wanted to take that up or that the healthcare professional seeing them doesn’t know how to draw up an action plan for the patient.

I would hope, that people would feel confident to go to their practice nurse or to their GP or whoever manages their asthma and say, I’d like a written action plan so I know what to do with my asthma.

And so should they take those extra medications themselves if they know they are having an attack or is that something that somebody else would need to help them with?

It should be done as rapidly as possible and would again suggest why it’s important to have an action plan because the action plan would guide them as to what they should do in the event of an attack and how much they should increase the treatment by. So we wouldn’t suggest that somebody without an action plan should just go increasing their treatment but if they’ve got either verbal or written guidance as to what to do and they’ve got the treatments to take then they should follow the advice that they’ve been given but also being aware to seek medical attention if the symptoms are becoming uncontrollable.

Is there much sort of fiddling around with the dosage of the drugs. I mean, how much is there?

There is quite a bit actually [laughs] I mean, you, I mean, obviously with me it’s gone up over time as like my asthma’s just generally gone worse but when you get, like say in winter if I get a cold then they give you an asthma plan… and so you know, you know, OK I’ve got a cold or I’ve done, you know, something’s happened and I’m just a little bit worse, you know that you can just, OK you increase this medication to that level and see how that goes for a few weeks. And then if that works and it clears, you know, and it, it copes then you can reduce it down again. You don’t have to even go back to the surgery because they know that that’s what they’ve agreed with you. And so they’re happy for you to do that kind of on your own if you’re happy to do it. I mean, it, it’s really nice because they’re sat, they’re kind of like, Well, if you’re happy doing that you just do that and you just call us when theres a problem. But if you’re kind of not sure you can just ring them up and say, Well, this is how I’m feeling, I’m not sure whether I need to increase that one. And they’ll go, Yeah, let’s try it for a week of let’s come in and have a listen.

So it sounds as though you work quite closely with the, the asthma nurse

Yeah.

…and are able to get the support you need when you need it but also

Yeah.

…be a bit, quite…

It gives you

…self-managing yourself.

A lot of control and it means as well that if you kind of know that theres a point where, OK this is the point I can go to and if that’s not working that’s the point where I need to see the GP or see the asthma nurse, and it kind of, it makes it so that you don’t feel like you’re bothering them… because you know that theres this written down agreement that this is how far you go and then beyond that you need their help. And so it kind of feels, you feel less guilty going in and going, I need help, because you’ve got this piece of paper that says you need to come in and get help.

I do think though somebody should of, it should have been reviewed better as I got older although it wasn’t. As far as I’m concerned, I wasn’t. Like I should have been probably back to the doctor for an appointment at least every six months, especially as a teenager. That stuff changes, we all know that stuff changes… as you get older and I don’t think they really monitored it particularly well.

Right.

For me anyway. Maybe it’s just it wasn’t severe enough or they didn’t think I was.

Yeah, but previously, would you have been called every six months?

I could not tell you. I don’t remember that.

Right.

Don’t remember that, but they must have called me in to look at those wee booklets.

And what would you have stopped you making the appointment and taking the initiative to say.

As a kid?

This is…?

I was a teenager so I probably wouldn’t have done that sort of thing.

You just were happy to go along?

Yes, I would have just gone with the flow of it all.

People are encouraged to, you know, manage their asthma themselves, self-management, which is my view, absolutely correct. Ones got to work out for ones self how, how you’re going to live your life, you know, on a daily basis, and take responsibility for it.

And I do try not to do things which wouldn’t, you know, wouldn’t make my health deteriorate. Well, for my own sake, but also for thinking well, you don’t particularly want to call on, you know, medical resources unnecessarily. I might need them for more important or acute things (laughs). And I, I think, you do have to take as much control as you can and I think psychologically that’s better than being sort of very passive about it. But one of the things that has given me confidence to sort of manage my asthma is simply length of time and experience, and I have, I feel, had very, very fortunate medical support, you know, the two main consultants that I’ve ever been under have, in their time, were both the top person in the UK, and that obviously gives confidence. And then my two GP practices both were, you know, very supportive, and that makes a lot of difference, even though they didn’t know the GPs in particular a lot of asthma, their attitude and approach I think was, was very good.

How often do you go to see the asthma nurse?

At least every six months, depending on if I need to see her more often I can. I’ll be seeing her in about a month’s time actually.

Is it useful to go and see her inter

Yes.

now and again?

Yes. She knows what shes doing. I like the asthma nurse. She knows what shes doing.

And what kind of help have you had from her?

Well how can I put it… shes… supportive of what I’m trying to do if nothing else.

What you’re trying to do in terms of?

Working with the asthma. You know, shell get me to the specialist if she thinks, if between us we think I need to see the specialist, but she knows I’m trying to manage it myself and she sort of, she just sort of, as well somebody else is kind of outside me as it were, looking, looking at it and giving me her opinion of what she thinks it’s doing.

So what would make her refer you to see the specialist, the consultant?

If I was having too many flare-ups and it wasn’t we couldn’t control it really I think.