Anne Y

Age at interview: 61

Brief Outline:

Anne was not clear why she started with epilepsy around the time of her menopause. She used to have migraines but these stopped when she started having seizures. She regards the seizures as an inconvenience, and her asthma (diagnosed a few years later) “just an irritation”.

Background:

Anne is married with three grown-up children and is retired. Ethnic Background: English.

More about me...

Anne reports no interactions between her asthma and epilepsy. Although neither condition is serious, she did have a very bad reaction to one epilepsy drug and was admitted to hospital. It was only afterwards that a locum doctor informed her that she’d had septicaemia (blood poisoning). She was angry that it took so long to find out what was wrong, when she had previously presented to her GP with weight loss.

Anne now accepts epilepsy as a part of her life, but couldn’t when first diagnosed: “It was just something I had to make myself accept before anyone could really help me.” She feels particularly confident with her latest epilepsy consultant. She used to have telephone support from an epilepsy nurse, but they’re no longer in post.

Of her two conditions, Anne considers epilepsy the more serious condition. She feels that epilepsy has affected her mental outlook. She suggests her irritability as “possibly” being a side effect of one of the many medicines that she takes. When she mentioned this to a doctor, she was told that aggression could be a side-effect.

Anne Y says that her medicines make her feel irritable and bad tempered. Forgetfulness and other frustrations are attributed to her epilepsy rather than prescribed drugs.

Do you find you have any side effects from the medications that you take?

Not on, I’m really forgetful now so a lot of things have happened that I should remember, I don’t remember. And I’m usually, my husband says to me, you know, “Oh, you won’t remember anyway.” And he’s quite right. I don’t remember lots and lots of things. Irritable. Bad tempered, I would say, more than normal.

Right.

And insecure in as much as I have to be, know everything that’s happening in my in my sort of situation so.

Right. 

And if somebody says something to me then, as far as I’m concerned, it’s cast in stone. So…

Right. 

Whereas before, you’d, you know, sort of be easy come easy go, now I have to know, you know I can probably say something three or four times to make sure that it’s right in my mind before I can go ahead with various things but.

Right. Right.

I think that’s possibly an effect of that because I didn’t used to be quite so precise but, as I say, I have to know specifically whatever is happening with regards to whatever.

Is that something you feel that has developed as a result of taking all these medications or?

I don’t know if it’s taking the medications or because of the condition. I’m not quite sure which it is. I think I think more the condition than, I think the irritability is possibly through one of the medications.

Right. 

Because he did and, when I said to him I felt I was really aggressive, he did say, “Well, that can be a side effect from the medication.” So that that’s probably all really that I could say and, obviously, of course, the blood problems again because I wasn’t on iron tablets. I’ve had to go back onto those because of big problems that are now occurring with my blood again so.

Anne Y is pleased to have been seeing the same epilepsy consultant for a few years but wonders what will happen if he leaves.

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. 

When Anne Y started with a new consultant she took in all the medicines she was being prescribed. She has found benefit from having tablets dropped or changed to alternatives.

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, it’s fine as it is now. So I think better, I feel better with him because, when they changed me to him, because I was taking so much medication, I took it all in in a big carrier bag, when I, when they first gave me my first appointment.

Right. 

And said to him I was concerned about taking so much medication so, of course, from then, it’s when he started trying to change things and make my amount of tablets less and different and that’s when, you know, things started to get a bit better. So it’s taken a while.

Anne Y is not sure whether her symptoms are caused by her conditions or are side effects of drugs. Medications could have caused problems with her blood, although she is awaiting specialist referral to find out.

I’m really forgetful now so a lot of things have happened that I should remember, I don’t remember. And I’m usually, my husband says to me, you know, “Oh, you won’t remember anyway.” And he’s quite right. I don’t remember lots and lots of things. Irritable. Bad tempered, I would say, more than normal.

Right.

And insecure in as much as I have to be, know everything that’s happening in my in my sort of situation so.

Right. 

And if somebody says something to me then, as far as I’m concerned, it’s cast in stone. So. 

Right. 

Whereas before, you’d, you know, sort of be easy come easy go, now I have to know, you know I can probably say something three or four times to make sure that it’s right in my mind before I can go ahead with various things but.

Right. Right.

I think that’s possibly an effect of that because I didn’t used to be quite so precise but, as I say, I have to know specifically whatever is happening with regards to whatever.

Is that something you feel that has developed as a result of taking all these medications or?

I don’t know if it’s taking the medications or because of the condition. I’m not quite sure which it is. I think I think more the condition than, I think the irritability is possibly through one of the medications.

Right. 

Because he did and, when I said to him I felt I was really aggressive, he did say, “Well, that can be a side effect from the medication.” So that that’s probably all really that I could say and, obviously, of course, the blood problems again because I wasn’t on iron tablets. I’ve had to go back onto those because of big problems that are now occurring with my blood again so.

Right. I see. Okay, and is that as a result of the medication you are taking or is that?

Yes, I think so.

Right. 

My consultant did say he felt that maybe it was to do with that, which is why I’m having various tests now with the blood again so.

Right. 

That could, you know, once they’ve decided definitely it could turn out to be because of that but, having said that, I’ve had to go now to see a haematologist.

Right. 

Because something is wrong with the platelets again, which is what happened when I was really ill but, when I said to him did he think it was because of the medication, he didn’t think so.

Anne Y has seen many doctors for her epilepsy over the years. When she started with the latest one she took all of her medicines in with a view to reducing the number of tablets she takes.

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

I think it’s 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, it’s it’s fine as it is now. So I think better, I feel better with him because, when they changed me to him, because I was taking so much medication, I took it all in in a big carrier bag, when I, when they first gave me my first appointment.

Right. 

And said to him I was concerned about taking so much medication so, of course, from then, it’s when he started trying to change things and make my amount of tablets less and different and that’s when, you know, things started to get a bit better. So it’s taken a while.

Epilepsy is of more concern to Anne Y than asthma. With her epilepsy, she most values the continuity of being able to see the same specialist consultant. She doesn’t mind who she sees for asthma care.

If you could give any messages now to healthcare professionals about ways they could improve the care that you receive, would you have any messages to give to them?

No, I mean my, I think my main my main thing is continuity. I don’t like change now with regards to the epilepsy. So but then again, that’s something that, you know, you can’t really help if doctors leave or they change jobs, but I think it’s just being able to speak to someone who you feels knows you.

So that you’re, it’s not a stranger, which I’ve had a few sessions of that when doctors have changed frequently.

Right. 

But I think it is just the continuity really. Again, unfortunately, in my case, I don’t really take the asthma as seriously as I do the epilepsy. To me the epilepsy is of more concern, so I don’t really mind who I see regarding the asthma, you know, and they just check my breathing, and that’s all I really think about with that. So I don’t count that as a serious situation but the epilepsy is the one that, obviously, I’m more obsessed with, if you like.

In as much as what treatment I get or really just who I see really to give me advice, if I need any, because I feel if this consultant leaves, I’ll have to start sort of building walls again with another one to. 

Right. Right.

Get the same sort of care so.