Loraine

Age at interview: 56

Brief Outline:

Loraine was born prematurely and began epileptic seizures at 5 months old. This triggered static neurological deficit, causing vision and hearing impairments, irregular heartbeat and cerebral palsy. She later developed asthma and long-term use of anti-epileptic drugs led to anaemia and bone loss.

Background:

Loraine lives with her husband and does voluntary/charity work. Ethnic Background: White British.

More about me...

Loraine was free of seizures for 20 years but then they started again. These days she has to travel over forty miles to see a consultant using patient transport services due to a lack of “a decent consultant in general medicine in our area.” Loraine would rather see a general physician for her epilepsy because as a complex “neuro case,” she prefers a “whole person approach” to her care. She describes herself as constituting “a good guinea pig in front of a class of juniors [doctors].” She previously struggled with one hospital doctor whose English usage was not very good.

She doesn’t like going to her GP surgery unless she has to because “there are too many germs at the doctors’ practice.” She tries to maintain care continuity by seeing two GPs who have both previously referred her, remarking that “some of them are a bit of a dead loss”. Following a seizure she is finds it difficult to speak coherently. Loraine carries a drug called midazolam for emergencies. Historically, taking drugs affected her menstrual cycles, “before I stopped [having periods] I was constantly on for three to six months a year”. She finds that her asthma and heartbeat are affected by weather conditions. She gets health information from talking books. She seeks epilepsy control foremost due to the number of her health problems.

Both she and her husband are disabled. They don’t have a car. She realises that her conditions “will never go away ever, it’s from birth to death” but she strives to “rule my disabilities”. Loraine works on a ‘patient panel’ and as a representative of a blind organisation and has taught girls with physical and learning disabilities to read and write. 

Loraine has static neurological deficit which causes numerous problems. However, her epilepsy “gets in the way” of potential treatments for other conditions.

So do you see a number of different specialists? You mentioned the neurological.

Oh yeah.

Specialists and the ophthalmologist?

Yeah.

I think.

Yeah and ENT. Ear, nose and throat.

Nose and throat. Right.  

Yeah because I wear a hearing aid.

And I also, because like I said, explained earlier, I have static neurological deficit which affects all your zones.

Your eyes, your ears, your mobility, then there’s your cognitive, your epilepsy and also you can’t have it without it, irregular heartbeat.

Even when, you can learn to ignore that but it can be a nuisance. 

Cooler weather is worse.

Or if you’re trying to relax sometimes but, I mean my husband has just been in for an angiogram while he was in, the doctor said, “I can’t do anything for your wife.” Cardiologist, can’t do anything for you. Because the epilepsy gets in the way again.

Okay. I see. 

So it’s, the epilepsy can cause a lot of comorbidity but it can also get in the way of fixing the comorbidity.

So there’s a lot of things they couldn’t fix for me because of my epilepsy, they can’t actually give you a grommet.

Loraine finds it difficult to get support for physical care whilst bathing or showering and wonders about gaps in adult safeguarding.

You just need some help with the physical needs. I could do with someone supervising me through a bath or a shower because it isn’t safe when you have epilepsy. You’ve got to have supervision and I had one, I had a nurse say to me, a) “You’ve only got epilepsy,” which is wrong and b) had someone say to me, “But we wouldn’t get you out.” And I was thinking, “Hello, this this is murder this.” [Laughs] If you wouldn’t get me out of the bath because I was about to have a seizure then you’re virtually committing second degree murder verbally, third party reporting that. In other words, a hate crime you could get them on virtually, if they didn’t do it. And I’m thinking, “Hang on a minute, but that’s why I need you.” But I mean they did, they don’t do that type of thing anyway these days, but you can’t get an enabler to do it neither because you’re told by the social services here that they wouldn’t be allowed to do that.

But, hang on a minute, they’re still committing the same crime, so where does adult protection come in?

Loraine’s conditions last from birth until death. When, as a teenager she asked her consultant how long she’d have to take medicines for, he confirmed that she will need to take them for the rest of her life.

Once you’ve had multiple disabilities, with the epilepsy I’ve got and what type I’ve got because of the comorbidities, it would never go away ever it’s from birth to death.

I asked my consultant this at fifteen, because I said to him, “I’m taking medication at college, I’m going to be frustrated and I’m saying, how long am I going to have to be on this medication?” And he says, “For the rest of your life, dear.” And he was a firm guy. And he meant it, you could tell by his voice.

And he said, “Your epilepsy will never go away. You may get clear patches but you’ll never be non-epileptic until your death. And the rest of your conditions will remain with you because of your first seizure and the seizures in the early years after that.” 

As a lifelong patient, Loraine feels doctors should listen to her. She describes organising her own blood tests and patient transport which she feels should be done by the surgery.

And often I find when, I had an experience last year, I went for an appointment and explained to this guy what my condition meant and I explained to him that they couldn’t fully test because my epilepsy was getting in the way.

Now what do you think the junior did? He didn’t believe me. He went to ask and see his boss, he said, “Well I’ve had to go and check.” He said, “The consultant has just said.” I said, “I’ve just told you that.” And I was thinking, “Hang on a minute, I’m a lifelong patient.”

 “I was thinking, this is a junior about to properly, about to be a consultant in this field, I don’t think, he’s got a chance. That’s what I mean. They don’t use their initiative. Even when a patient tells them they’re life long, there’s just no initiative to actually believe a patient. Sometimes the patient knows best.

So do you.

And they don’t always understand that.

I mean do you feel that you’re listened to on the whole in consultations or is there a lack there or?

[Laughs] sometimes yeah, sometimes no. It’s difficult when you’ve got a new consultant, to know how to approach them actually.

Because you don’t know whether they’re listening to you, or going by what they know, or going by what they think they know.

I should be on recall for blood tests to be honest. I have to recall myself. I have to get my own transport. Shouldn’t have to.

It should be done for me. The consultant wants it to be done for me but I have to get my own transport, and this is a patient who’s also been on the PCT previously so it’s not as if I don’t know what I’m entitled to.

Loraine sees many specialists but chooses to consult a geriatrician for epilepsy, rather than a neurologist, because he sees “the whole picture.”

Is there anyone that considers you or do they consider you as a whole, and your conditions as a whole at all?

I think they’ve got to, yeah. Definitely, I mean I’ve had my ENT consultants say to the juniors say this is neurological causation so obviously. Same with the ophthalmologist and the other consultant. I see a geriatrician for my epilepsy.

So he does that as well, he sees the whole person. You’ve got to have the whole picture. They’ve got to, they can try and sort of sub-specialise all they like but, when it comes to people like myself, they’ve got to consider that might kick in.

As a lifelong patient, Loraine feels she knows more about her conditions than some doctors do. She feels neither listened to, nor believed, when she tries to explain her conditions.

Because even when I actually gave a junior doctor an opportunity. He was about to do his last exams. And I was about to have an eye clinic.

And the ophthalmologist I had, I knew for a fact he knew his meat and drink. He was brilliant and I said to this junior, because I went to church, we knew him through church, I knew him as a boy, so I said to him, “If you’d like to, seeing as you’ve got exams coming up, you can come and sit in on my test.” He didn’t take advantage of it and he became a GP later on and wished he had, because he was totally confused. He’d come across a multiple case and he was lost because he hadn’t taken advantage of that appointment. I could have given him a freebie so he could learn, so he could listen to a patient he knew what was, because I understand that he agreed to test him on my conditions and what they all mean in basic plain English. And often I find when, I had an experience last year, I went for an appointment and explained to this guy what my condition meant and I explained to him that they couldn’t fully test because my epilepsy was getting in the way.

Now what do you think the junior did? He didn’t believe me. He went to ask and see his boss, he said, “Well I’ve had to go and check.” He said, “The consultant has just said.” I said, “I’ve just told you that.” And I was thinking, “Hang on a minute, I’m a lifelong patient.”

And I was thinking, this is a junior about to properly, about to be a consultant in this field, I don’t think, he’s got a chance. That’s what I mean. They don’t use their initiative. Even when a patient tells them they’re life long, there’s just no initiative to actually believe a patient. Sometimes the patient knows best.

So do you.

And they don’t always understand that.

I mean do you feel that you’re listened to on the whole in consultations or is there a lack there or?

[Laughs] sometimes yeah, sometimes no. It’s difficult when you’ve got a new consultant, to know how to approach them actually.

Because you don’t know whether they’re listening to you, or going by what they know, or going by what they think they know.