Do you usually see the same consultant and the same nurse?

It is not always the same nurse which can be quite confusing sometimes. But if you know the name of your nurse that is always handy, because you can always ask for them. A change in doctors, nurses I would advice not to do really. I have found it very difficult sometimes, one nurse will say one thing and another nurse will say another. They won’t all agree, and they won’t all know what the other one has, why the other one has suggested something. Quite recently I went to a doctor and they’d described the type of epilepsy I had and I didn’t have a clue what he was on about. I suppose it was another term he’d used for my type of seizures, but I had never heard it before and it can be quite difficult sometimes.

Sometimes you have got to speak out, that’s a big thing as well. If you just sit sometimes and listen I think you are sort of used to going to the doctors if you have got a flu or the cold but if you have got epilepsy you need to speak out and sometimes say, ‘Well I am feeling this. And you need to ask the questions, you can’t just expect the doctor to know what is going on, you need to talk, because it is quite an individual thing and it does change. It changes from one person to another and then over time as well. When I go next time things might change again and it is important to you know to illustrate that, so that they can keep up with it.

Absolutely. Do you find it easy to explain to them and ask them questions, is it easy for you?

It is now. It wasn’t easy then. When I was younger, it was very difficult. I would just take whatever medication they gave me [laughs]. If they gave it and I would take it, but now I will ask, and if they give me a blood test, I will ask you know why you know, at this particular time. Sometimes they are quite routine but not always, and certain tests sometimes you’ll ask. You do tend to ask more questions as of now. I don’t know if it is because I am older or feel more confident but it is good to ask the questions. Sometimes you might just get a simple answer but sometimes it can really help you understand a bit more.

The best thing so far was conventional medicine. My consultant at the hospital has been fantastic. He’s been so helpful, you know, and willing to try things, you know supportive, being there when I need, when I need him, when I need to talk to someone about what’s going on. And he never gives up, he says, Oh well this can work. Let’s try this, let’s try anything He always has something new up his sleeve, you know, which is really lucky [laugh].

And I’m waiting for the day that, you know, that row of medicines will stop, because some work for a short while and then they stop working and, but, I have been very lucky I believe with him. I was very lucky because I know that a lot of people don’t really communicate like that with their consultant. You know, they barely see them. They go and they see a registrar, a different one every time, and they have to start the story all over again. I was very lucky being able to see the same person for years now. It helps.

I’ve got loads of questions in my head to ask them, but when I see them and ask them they don’t really give me straightforward answers. So I don’t really know what kind of epilepsy I’ve got and I don’t really know much about the epilepsy I’ve got really. To be honest I ask them questions and they all say different things.

Do you see different people?

Yeah. There’s never really the same person, so you can’t really get comfortable with the doctor. Sometimes if I go to see a doctor I need to get to know them and see them more than once before I start asking them questions. But you just get random doctors, that you don’t really know or haven’t seen before so you. I don’t like to ask them things, or talk to them about it because I feel like they don’t know me.

And who do you see? Is it a neurologist or your GP, or who do you see?

I’ve seen a neurologist in the hospital once, and then I saw a nurse, but if I just need to get a prescription for my tablets down the doctors I go down there. But then there’s always someone different, but they don’t ask you anything, how you’re doing with it, or anything, they just give you a prescription [laughs] and then you leave.

And that’s it?

Yeah. That’s it.

And you would have lots of questions to ask them?

Yeah, kind of. I have questions, but then I don’t ask them because I don’t know them, because it’s always someone different. And if you want to see the same doctor you can’t. You’ve just got to have basically whoever’s there.

I must be honest, I’m not satisfied with both the consultant that I went to see and also my GP. Even because, one of the reasons why he’s my doctor is because I’m concerned that there’s not enough support for women around gynae issues and so when I joined that surgery it was because he was a gynaecologist so I was thinking Oh good, I’m in good stead for when I start the menopause etc And so I’m disappointed that I haven’t been given any literature, there hasn’t been any, there isn’t any support really for women to go out and find out any information about it.

I’ve changed my GP within the practice. I’ve found out that there’s a woman who specialises in gynae issues. So I’ve just registered well I’ve started to see her now.

And is that different?

Yeah, I think it’s a confidence thing as well. I think it’s a confidence thing in terms it’s another woman that you’re able to talk to and she seems more open and we can have a more detailed conversation.

I just feel more comfortable talking to her than talking to the male. I thought when I chose him as my doctor because he was a gynaecologist I thought I would have the confidence but the conversations that we’ve had have just been so matter of fact that that’s why I decided to move.

We had thousands of questions afterwards, but nothing actually at the time. But the hospital were absolutely brilliant and never failed to answer all our questions. We had a meeting fairly soon after we’d lost Martin, where it was explained to us that he’d had this congenital condition. And then we had a further meeting, probably two years later, because we had all the questions that were just niggling us, and they never failed to welcome us at any time.

My questions after we lost Martin were mainly in relation to the condition. He’d collapsed so suddenly but, as a mother, you beat yourself up. You find something to feel guilty about because he was so young and healthy. So I thought, Should I have known? Should I have noticed something? Was there something I missed Things like that.

I then worried that he hadn’t been seen quick enough because we don’t live near a big hospital. I was assured afterwards that he would actually have been brain dead long, long before he ever reached hospital.

The consultant drew diagrams and gave me lots and lots of explanations that absolutely convinced me. But I obviously did have concerns at the time that we hadn’t done something right, or even they hadn’t done something right.

But I had no concerns over the care that Martin received. As a donor, he received equally good care as he would as a patient who they were trying to save, to live. Because those organs were just as important as if he was being treated to live. And as the co-ordinator [specialist nurse] once said to me, when she accompanied Martin to the operating theatre on the evening that the retrieval took place, he will be looked after just the same as if he was having any other operation because those organs are very, very precious to another person. So there’s no concern that, because Martin had actually died, that he wasn’t going to be treated in exactly the same way as anybody else.

There was a young doctor who basically was delivering me the news that he thought that it was highly unlikely John would survive what had happened. And that’s some pretty stark information, a) to receive but for the doctor to give it.

And throughout the whole time that any medical people spoke to me, they kept eye contact with me. Which actually at the time I suppose I didn’t necessarily really think about that, but afterwards realised just how important that had been. Nobody evaded my gaze. Nobody evaded my questions. They answered me as honestly as they could, given the information at different stages, the information they had, to know what they could, you know, if they knew something they would tell me. I was kept informed and involved throughout the whole situation.

They [doctors] told us that it would be very dignified, that it wouldn’t be frightening. [My son] was also in the room, and obviously for him, well I hadn’t intended for him to be in there. I think all parents want to protect and I felt that it would be better if he wasn’t there, until one of the medical team said to me that, whilst I knew my son better than they did, had I considered that if [my son] went from the hospital and his dad was, although unconscious still alive, the next time he would see me I would be telling him his Dad had died. And I hadn’t really thought about it like that. I just wanted him away from the pain of it all.

But I will be eternally grateful to that lady because I think, from [my son’s] point of view, he saw everything, really, the whole way through and was with his Dad when he passed away. And it was what they promised. It was dignified. It wasn’t frightening, and John just slipped, literally slipped away. And we could then just say our final goodbyes and come away.

So I have a lot to be grateful for generally. And I didn’t necessarily see it like that at the time. And I think that we were able to adjust to what had happened the best way that we could. And certainly from [my son’s] point of view there was no mystery. He understood what happened and was with his Dad to the end. They were very close, John was the main carer while I was at work. So they did have a very close relationship.

Well, I think because I’m quite inquisitive and say, ‘Come on, spill the beans’ they tell me in more of a blunt way, which my husband found very hard, because he tends to put his head in the sand a bit. And he didn’t cope with it very well. But when it’s yourself, I think you cope better than coping for somebody else, don’t you? And I do push them a bit when I see them. It’s like, you know, ‘How am I doing? How long am I going to last?’ [laughs] And they don’t know, they don’t know. Everybody’s different. And the original specialist I saw, I saw him in September, and I said, ‘I met a man at a garden party whod got MND, but he’d had it for nine years and he’d plateaued. And I said, ‘That could happen to me. I could plateau. And this specialist said, ‘Ah, but a lot’s happened in the last year, hasn’t it?’ [laughs] And I thought, ‘Oh, I was trying to be upbeat and, you know, trying to look on the bright side. And he was like, ‘Get back down. [laughs] So I suppose it was my fault for wanting to know everything. But I think – oh, and another chap I saw, who was a stand-in for the specialist, he was Irish, and he was really upbeat and boosted me. So as much as you want to know the facts, nobody knows the facts because everybody’s so different. But if you do talk to somebody who gives you a bit of a lift, then it does help you, yeah. Because you can get, you know, really low. And nobody knows, they can’t tell you.

What about your husband and, and, since the diagnosis, how has he coped with it?

Well, he put his head in the sand for a long time. And I had to keep saying to him, ‘Come on. This is happening, you know. You’ve got to face up to it, because I can’t carry you through it. I need your help to get me through it. And that’s how I felt I was being, that I was being the strong one for him. But then sometimes I’m not that strong, and I need him to lift me up. Anyway, he’s a lot better now. And having never cooked, he’s cooking and doing everything. But it is hard on your family, I think, and your friends.

What about telling the children, how quickly did you tell them?

Straight away, yeah. Of course, nobody knows anything about it, because it’s such a rare thing, isn’t it? I’d only heard of Stephen Hawking with it. And he’s had it about thirty years, hasn’t he? So you think, ‘Well, it can’t be that bad. [laughs]. So then of course everybody gets on the Internet and looks it up, and it’s all doom and gloom. And you’ve just got to say, ‘Well, you’ve got to think about what you’ve got, not what you’ve not got.

With my own children, because as I said to you before, they are very bright, they pick up on things very quickly. Weve always been a family that actually did talk about things. At one time I worked as a family planning nurse and we used to talk about sort of some of the taboo subjects as dinner table talk, like sex and you know, contraception and things, and so when I did speak to them about it I found it quite easy to talk to them, though I did make the mistake of not telling everybody everything right at the start, because I thought the youngest one was too young;

I think really, you’ve got… It’s difficult, it depends on the patient, it depends on the children really. I’m quite articulate, my children are quite bright and quite articulate, so you can talk to them about most things, but not everybody is articulate themselves;

And despite all of that when I was first having treatment for breast cancer I did actually get the breast care nurse where we used to live to come and actually talk to my children about the disease and answer any questions or worries that they had.
And I found that quite helpful for me but also I think they found that quite helpful, and I think that they put their minds at rest and we didn’t talk about things a lot after that;

I felt really hurt and angry, angry that, you know, I’d had a heart attack as well and then I was looking back at my life and, you know, thinking, you know, why? Why did I have a heart attack, I didn’t do anything, you know, really bad, to excess. I smoked, that was the only thing that I did really, and worked hard.

No-ones, no-one had ever actually sat down with me and spoken to me about the heart attack or why I could have had a heart attack or, or anything like that, really. I, I don’t think theres enough, well for, for me personally, as a patient, I didn’t feel, think that I was spoken to enough about it.

I think a lot more reassurance about, you know, about life in general and life after the heart attack and, you know, what I can do and what I can’t do. You know, I think that’s what I need, I think that’s what you need after you’ve had a heart attack is reassurance.

The [local hospital], where she [wife] was first, they were unbelievable. They bent over backwards. I was quite surprised in fact that the nursing team there, literally if the nurse who was scheduled to look after Jen, if she wanted to go and go to the loo, or have a cup of tea or whatever, she couldn’t go until there was another nurse available to take over. So at all times there was a nurse by her bedside.

And, again, the same when we reached the [city hospital]. It was a lot more high tech there than the equipment they had at the [local hospital]. And again the staff there were just absolutely brilliant. The doctors and the nursing staff, any questions we had they went to great pains to explain, because there’s all this massive machinery around and they went to great pains to explain, Right, that’s her blood pressure, that’s this, that’s that So we could, if we went away from the bedside and came back, the first thing we’d do is look at the screen and we’d know exactly how she was getting on. Because they had taken the trouble and they didn’t make a mystery of anything.

But no, as I said, they made sure that, on every occasion, we knew what was going on. If they had to ask us to leave for any reason, when we came back in they’d say, Right, we asked you to go because we had to do a, b, c whatever. And obviously it’s not nice for outsiders to be there watching while they’re doing their tasks. But you certainly couldn’t fault the care on either side. They were both absolutely fantastic.

So what were the good things, what happened when you got into coronary care?

They explained, as soon as I was there they explained to me I was going to be tearful, it’s a big thing, and they explained all my feelings I was going to have. I’m going to do a lot of crying and they explained that they’re going to put this drug in me to get rid of the clot and everything, they just explained every inch of the way what was happening and how I was going to feel.

And they was right, everything they said, they was right and they was there, I mean in the night when I was frightened, they was standing at the side of my bed in the middle of night talking to me for an hour or two. They was absolutely brilliant, they was there answering any question.

Is that what he explained that first day when he came to see you or was that later on?

That was later on. They did it very well. They explained the gravity of the situation but not in a way that would have completeI mean every time, it was almost like a drip feeding process. And I mean, it might not work for everyone, but it worked well for me, because it enabled me to process little things at a time, and you know, the paediatricians came and explained what would happen if the baby was born now, at that point. The anaesthetist came in and explained what he would do, and how the decision would be taken as to whether it would be general anaesthetic or whether it could be done by spinal block and you know, if the extent of my bleeding was massive, you know, whether I’d have to be heavily sedated and in Intensive Care for a number of days. And I remember they did explain from day one the possibility of a hysterectomy and all of that sort of thing. So
It sounds like communication in the hospital was really good.

Excellent, yes.

Can you just describe that a bit more to me?

How they communicated with me?

Yes. What, what, how it worked.

Well they came to see me every, a registrar or a consultant came to see me every day. I mean some days I felt really lonely in there to be honest. Because they’d come in, any bleeding. No. Fine. And they’d go. And I didn’t require any, anything else. I didn’t require. I mean they listened to the baby every couple of days. But I didn’t need that, if I was in the community, I wouldn’t be having that, or the blood pressure checked every day. So there were some days when I thought, oh I could be anywhere. And they were incredibly busy there. But when I needed things, you know, it was immediate and it was spot on and it was compassionate and it took into account the whole family. They were amazing. And on my never ending list of things to do is to write to the chief executive, just, you know, people always complain and I justnbsp;

We had one incident where I felt a doctor had been, had come into the room and hadn’t introduced himself. So I had no idea whether he was a doctor or a cleaner. And that was the only time, the whole time in hospital that I’ve had any, any sort of remote, I mean, you know, the portering staff used to bring me a bacon sandwich every morning. Well, you know, I got a bit bored of their breakfast cereals. They were, I shouldn’t say that, I shall probably get them into trouble. They were outstanding and, you know, as I said before they sort of drip fed information which I found really helpful.

When there were bigger bleeds it was reiterated, so they went through the same procedure again. One time, it was, I think it was two, it was about two days before I ended up delivering. And a girlfriend was over there at the time, and this same consultant who gave me the first explanation was the one on call then. And he went through it again, and he drew diagrams of how they could do various hysterectomies and he left the room, and my girlfriend burst into tears. I said, What’s wrong And she said, This is so awful Oh, you know, you may be get so blasé about it, but you know, the anaesthetist were great, they all, you know, they explain things very clearly. Matter of factly, which is what I needed. And then when they felt I was becoming a bit complacent then they would term things perhaps more strongly. But you know, ultimately everything was left down to me to you know, to the point where I wanted to go out for d

Well I do have a home help now on weekday mornings, through social services. For years nobody even told me I could get incapacity benefit. We were struggling so hard. Nobody had told me, not my GP, not the health professionals at the hospital, nurses, social workers, nobody, that I could get state benefits because I wasn’t able to work, I was so poorly. So I’d had the disease for about four or five years before I filled in the forms and started getting benefit. But it was a friend who was a health visitor who asked me one day, ‘Are you getting incapacity benefit?’ and no I wasn’t ‘cos I didn’t even know about it. And the help I have in the house now, that has been a real lifeline;

What I think is not always taken into consideration is that people are very anxious when they go to a rheumatology clinic or whatever, and however hard you try to listen, I think people forget what they’ve been told sometimes. And recently I’ve been to a hospital, which I was extremely impressed by, because on my initial consultation with a surgeon, I was given the name and a telephone number and hours that I could contact a member of his team, a nurse on his team. So that when I got home, and I thought to myself, what did he say about that? How long was it? What would I be doing after I’d had the operation? I had a, a name and a telephone number and days that this person worked and the hours that I could ring and I thought that was fantastic. I don’t, for me I probably wouldn’t need it, but there are lots of people that I think need that sort of service ‘cos you’re obviously anxious when you go;

The good thing about going to the neurologist is that there are, you’re probably aware, a number of care centres around the country. I think it’s up to 15 now, or will be soon, where MND patients are encouraged to go. And it basically provides a number of services under the one roof which you can visit, well, on the same day, for example occupational therapist, physiotherapist, nutritionist, and the neurologist themselves. And rather than go piecemeal to Social Services or wherever, you can go to the care centre and if you obviously let them know what your interests are or what help you’re looking for then you can prime them as to what matters you want to discuss and what help you think you need. In some ways the care centre I go to, it’s like an extra GP, if Ive got a problem that something doesnt seem to be right.

I had something about six months ago and I just wondered at it, and so I sent an e-mail off to the neurologist. And he replied that to the best of his knowledge the symptoms I was showing was nothing to do with motor neurone disease and he suggested I went to my GP. And that all took only a few days and it was nice to get that sort of informal diagnosis – not diagnosis – yes, diagnosis. But in the end I didnt go to the GP because the symptoms disappeared and the neurologist had said that, If it goes away then don’t worry about it. Well, no – You can go and have a, if you want to be certain, you can go and have a, go to the GP and have some tests, and otherwise up to me whether I do anything about it or not. And I decided not and it hasnt happened since, so I’m unconcerned.

So having all the services together at one place is helpful. That’s what you’re saying?

Yes. So it’s a deliberate policy on behalf of the MND Association to try and get these care centres around the country, as many as possible. Again in my case turning up at the neurologist once a year is not particularly beneficial to myself or to them, especially as I use e-mail to discuss things if I need to. Ive also found the local Social Services, occupational therapist and physios to be very good and very responsive.