Well as I say communication is one of the main things that you’ve got to do. But if you don’t know what’s wrong with you, and the doctors don’t know what’s wrong with you, and the professors don’t know what’s wrong with you, and this one doesn’t know what’s wrong with you, it can be very hard to communicate.

Because the simple thing is doctors aren’t too bad but surgeons and professors and all the rest of it in the hospitals and all that, they’ve got a language all of their own and they forget, they went to school for what 6 years to learn all these fancy words but we don’t know what they are.

So communicating with somebody, like a professional, like a professor or a doctor or whatever, they know the medical names for them, we don’t. So you’ve actually got to say Excuse me, go on and say that in plain Englis, because you would need to have one of these medical dictionaries and you would be there all week trying to figure out what the one word was that he said, so you’ve actually got to say to them look I don’t understand what you’re sayin.

He might understand what he’s saying but you don’t so you’ve got to say to him Look you have to explain it to me, in my language not your, and that can be quite, because an awful lot of surgeons and professors can be quite look down their noses at you kind of thing. You’re supposed to do as I tell you, what it used to be years ag, you didn’t answer the doctor back, you didn’t do this and you didn’t do that, you did what you’re were told.

Whereas now you seem to be more open, you can actually say to them No I don’t agree with yo, without being a very bad person, do you know what I mean? Whereas years ago you don’t answer the doctor back, whatever he says is wrong with you that’s it, you’ve got to live with it. But you don’t now, it’s a case of you have to ask them to tell you what’s wrong with you in your own, in your language not theirs.

James’I guess so ’cause a lot of doctors don’t like to tell me what’s going on, you see.

Why do you say that?

James’Well it’s just my consultants I think. They don’t like giving bad news. My consultant hes called [name] and he always tries to. If he has to give bad news hell wait until he finds something good. So he could have the results in two weeks of whatever hes done and you could wait two months because hell have to wait until theres something good to tell as well. And when he has to tell bad news he usually waits ages to do it, you know, just in case something good will happen.

Always tell what. Tell the, tell the young person everything that’s going up and use small words. ‘Cause sometimes doctors use all the medical terms and terminology and sometimes even the parents don’t know what they’re talking about. So it’s like use words that every day, you know, use everyday English to explain what’s going on ’cause it’s a lot easier to deal with when you know what you have.

Have you had experiences of that, of not understanding when they use long words or medical terminology?

James’Well it’s, it’s more of that the new doctors, they like to impress people by using all these scientific terms.

What do you mean by new doctors?

James’You know just doctors that have come to a new ward or come to this hospital new and.

Mother’Newly qualified really because.

James’Yeah newly qualified.

Newly qualified ok.

James’And they like to use all these, these, this terminology because they can I think. It’s like, you know, weve learnt all this stuff we might as well use it. And they, I think they forget that we have no idea what they are talking about. We do not know what they are saying. They could just be saying blah, blah, blah as all we could, as you know, for all we know.

And what about your consultant, the person that sees you?

James’Now hes always been very good. Hes always used quite, hes always used small words hasn’t he? But hes been with the hospital for ages, years and years.

Ok and the nurses. What’s your experience of the nurses?

James’Oh they’re very nice people. You know you. ‘Cause I’m with the same nurses all the time, you see, ’cause it’s, it’s the nurses that go to the hospital, stay there for years in the same place. So you get to know the nurses and they get to become your friends rather than just nurses. You know so it’s just a very friendly atmosphere, very nice people.

Now when he explains things to do with your condition do you understand when he talks to you or sometimes he uses language that you don’t understand?

He uses language that I don’t understand they’re like mild abrasions. I don’t get what he means by mild abrasions. And I, in the, and I do get, I understand some words like, he bruises easily, like he bleeds under the skin. And it’s like and that’s and just talks about that a lot of the time.

Do you say anything to him? Do you say, ‘Excuse me I don’t understand, can you explain this to me?’

No. I didn’t get a chance because he was, he were talking to me mum all, he was talking to my mum all the time.

So he doesn’t talk to you?

Well he sometimes does but not all the time but he just talks to mum mostly, my mum mostly about what hes going to do, what I’m going to do.

Ok. And then your mum explains to you?

Yeah.

In-grown toenailsThe nails, instead of growing outwards, they can grow back in and it’s very, very painful. And it won’t stop doing that unless you stop taking the medication. So I had to go for surgery for my toes, that’s a reallythey had to pull it out and cut off a big chunk of it, it was quiteit was very problematic. So I had to complain to the doctor. I would say my doctor was slightly difficult, I know she was just aiming at a very good CD4 count but I was really suffering… every time I went, I complained about the headaches, the rash, my skin really got bad. She explained again that it’sagain because my immune system’s going up, so that’s why I was getting the rash. I was tired, breathless as well. I used to get breathless, yeah. But when I really had the ingrown toenail I really couldn’t take it anymore, I said no that will have to change

And I went into [Hospital] because they wanted to sort out the methotrexate problem, because they said, ‘You can’t come off it because we don’t have anything else to give you. And I said, ‘Well I’m not taking it any more because’ It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren’t really too bothered. They said, ‘If you’re not on it then you know you’re, you’re not going to be healthy enough. And, I didn’t care. I didn’t care if I couldn’t do anything, I just didn’t want to be sick any more.

So I went in and various different doctors came to talk to me ‘cos I was under Professor [name] at [Hospital] and she has a huge team and they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, ‘No, I’m not taking it. You can’t make me take it because I don’t care if I’m, if I’m under 16 I’m not going to take it. And I just said, ‘No. And they said, ‘Well well give you anti-sickness tablets. And I had tried those, they didn’t do anything. I said, ‘But they don’t work so I’m not taking it. So they eventually [laughs] sort of, they listened to me.

I’m very involved in how it’s managed and I make it my right to be involved as well. I think some people, I wouldn’t say they get walked over but they feel that they don’t have the right to say no because it’s difficult, I must admit when you’ve, if you have got quite an over, over-bearing consultant, I mean my consultant she has to be strong and she has to be pushy because she has to fight for a lot of people to get the medicine they need, but that also in turn means that you have to be strong and have to be willing to fight if you disagree about something. So, it is difficult but you just have to have the strong will to do it. And you pick it up along the way.

I mean I remember going, just after I was diagnosed I remember going up to my GP to get my prescription and he says, And what can I do for you And I’m saying, Oh I’ve got Parkinson’s Yes but why are you here And I thought, you know, is this how it’s always going to be. Are they never going to know anything about it?’ which is pretty much how it has been to be honest.

When ropinirole, which is one of the treatments that I’m on, when ropinirole first became available for, for me to take, I went up and I asked, I said that, you know, I would like to be put on to this because it’s a better form of treatment for me at the moment because it, it was better for you when you’ve had first been treated for Parkinson’s And my GP just kind of looked blankly at me. He just didn’t have a clue, knew nothing at all about the treatment or anything. didn’t even understand really what, what it was all about, and we had to come home and run it all off from the internet and run off sheets and sheets about it. Take it up to them and eventually after about three or four weeks I got put on to the ropinirole and it’s been great ever since, you know, it’s a really good treatment, well I feel it is. I don’t suppose, I suppose like any other treatment it’ll depend on the person their selves you know? But it’s been very good for me, it’s helped me a lot.

Certainly theres a definite lack of awareness of MND with, with health professionals. [Mike writing on whiteboard]. Our GP openly admits, you know, Mikes the first MND patient that shes ever had, and might be the only MND patient that she ever has. So of course they’re very much, they learn from what we learn, you know. And weve become almost the experts in MND in our situation. The frustrating thing is that when you do go out of the team – the team that work with us are, are superb, absolutely superb – but when you’re taken into an alien environment, if something happens and you’ve got to go to a different hospital or whatever, it’s so frustrating because theres so little knowledge about MND. And as I say to people, the people try to treat him as a normal patient, and he isn’t. Theres other factors that need to be taken into consideration. So for us there, there needs to be more awareness at the medical level of what actually is going on, you know. And theres some horrendous stories on the websites about how people are treated, how MND patients are treated when they go in. And God forbid, if Mike was ever on his own, I don’t know how hed cope with it. People that are on their own. So there needs to be more, more awareness about MND. It seems to get forgotten. Because it’s such a rare disease, it gets forgotten, you know. One observation that I made just recently and I passed comment about it, when we go to the local hospital, the hospital waiting room is full of information about MS. Theres not a single piece of literature about MND. Now it could be that Mikes the only patient that goes there with MND, but it doesn’t matter. There should be information in that clinic about MND. So you just feel as though nobody’s listening really, you know.

So I avoided doctors for a long time. And then my partner now, said, Look you’ve gotta get this sorted And I went in and I saw my doctor and, yes I think he did it for the right reasons because he knowsHe must’ve realised straightaway I was stubborn – I will do things my own way – but he was also very rude and obnoxious, and I did feel like wanting to change my doctor but then I thought well maybe he’s doing it because I am that kind of awkward person that, I will only go in if need be. But at the same time he was still quite rude – I suppose if somebody’s not going to look after themselves then yes they’ve got every right to be rude – but it does make it hard going into see them.

And I just luckily enough my nurse, she actually looks better, looks after me a lot better, than my doctor and I go in there and we’ll sit and we’ll actually chat and she’ll ask me how I’m feeling, what’s it like when I take my insulin.. she suggests little things, you know, like just going out, going shopping in, in the daytime. And I’ve felt that she has made a difference to my health and wanting to get better because she’s took time to understand me and my problems first. You know, to realise, you know, it’s more than just giving out somebody a pill, or saying, you knowLike she’ll say, Just, you know, if you’re going to smoke just cut it down You know, she’s given me little guidelines like ‘Gradually do thisNot, ‘That’s bad, stop it. ‘This is like this, stop doing that.

And like she understands like, it’s like, because of the size of me, like a lot of people automatically think you eat all the time, and it’s like it’s not often that case. I mean [partner], he actually eats like anything, I’ve never seen, you know, somebody eat so much and it’s like, how can he be the size he is and what he eats and what I eat, how can I be my size?

But I purely know now it’s exercise that’s going to get my weight down. And you know, I’m not a junk eater, I like fresh food, I like vegetables, I like fruit, but when a doctor just looks at you, like my first doctor, and he says, All I could see is because like I said to him, Every week I went in with my diet plan And he said, But you can’t be eating that because of your size And I said, Well I, why would I lie, I’m coming to you for help? I have no reason to lie I want to change, you know, you know I, I don’t wanna be this size. But obviously there’s something wrong – that’s why I was going to him.

But it took like, for him to find out more about me, to make him realise that, you know, just because I’m a big girl doesn’t mean I sit and eat all day. And like I have exercise and I go out, I used to do a lot more exercise than I do now which I will get back to, but it took that, you know, because at first he was like, Oh I just give you this pill and I’ll just give you that And it wasn’t that, I think it, it took that little bit more, for him, I think to open it up and say, you know, you can treat this by doing this and doing that, but yeah doctors are the, the scariest of things.

Initially it wasn’t, I didn’t have a very good relationship with my consultant. He had the view of, ‘You will do what I say and not dare to question me. But once we’d had a little discussion or two and we’d kind of evened out the doctor- patient relationship slightly. I didn’t like being treated as a shell, as a disease. I was a person. I wanted to be treated with a little bit more respect and humanity. And perhaps I shouldn’t have done but I told my consultant that, and from then on we’ve got on famously and we get on really, really well.

I wonder if your age had anything to do with his attitude towards you?

Possibly. He was very much old school medicine. And I don’t think many people would have said what I said to him because he was quite, he had a bit of a reputation for being a sort of old school scary doctor. And I think a couple of the nurses were a little bit, wouldn’t have dared question him as well, but I was the patient, I had nothing to lose by doing so. And I think that really helped. Yeah I get on really well with him now and have total respect for him.

Is there anything perhaps that you would have liked to have had more say in?

Well, it took me such a long time to get used to the idea that I was actually going to have a hip replacement. I know you have to wait for the operation so I had six months or so to decide against it. But I was, I wasn’t pressured into having it, it was just it looked like, Oh, next patient. Yes, x-ray says this, do the injection, do the operation, on the list, next patient. What’s the next patient?’ It looked like a conveyor belt to me, and obviously, with the targets that the NHS have to manage I realised I’m part of the system and I had to take my turn and do what they decided is the right thing.

So I went along with it, but I was, I, I just, I hadn’t got my head round actually accepting it. And, at my pre-assessment, which was very thorough, at the hospital, everybody talked me through it very, very well, the nurse, the occupational therapist, the anaesthetist, and everybody, accept the consultant who said, Sign here, we’re ready to do the operation anytime from now. And I suppose I must have had a list of risks, I can’t remember having them, and it was seeing the consent form just like that, I, I did, I felt quite that I wasn’t a person I was just doing it because I was told to do it. And I knew I was going to have the operation, but it was, it was a bit of a shock the way it was presented, just like that. it’s, it’s coming to terms and I didn’t come to terms with it until I was on the table.

And at this point, when we got the results we also had an appointment to go back to our first hospital to discuss with the obstetrician what we wanted to do. So we went to see him.

Unfortunately, I don’t know whether he hadn’t read our notes before he came in or what, but he was probably the most unhelpful professional that we met. He seemed very, he was like, ‘Right, you’ve made the decision to terminate so let’s just get on with it,’ and, you know, ‘Go home and forget about it.

And in fact, we were wanting sort of more information from him and he said, you know, explained about taking the tablets 48 hours before you want to go in, and so he was saying, So, if you want to take them now and come in, in 48 hours, and I was saying, No, you know, I need some time to think about this’, and I was thinking more like, well be coming in, in 2 weeks’ time.

He seemed, he explained to us that for some terminations you can have under scan, under ultrasound you can inject the baby’s heart with potassium, if you like, to do the termination, and then you give birth afterwards, which for me was horrific and was just not an option.

I just can’t imagine, you know, it was really, one for me, I didn’t want to give birth to a baby that was already dead, to me that was even worse than the situation we were in. And to watch it on screen that happening to me just sounded absolutely horrendous, just cruel.

So when I said to him that I didn’t want that, he seemed, he was almost like quite surprised because I was telling him what I wanted, rather than him telling me what was going to happen and me saying, Okay.

So I said to him I didn’t want that. I said that I wanted to give, just to give birth and, you know. And the fact that I said to him that I wanted a couple of weeks to think about it. As well as the practicalities of sorting out baby-sitters. [husband’s] parents were away on holiday so we had to wait for them to come home and things like that. And when I said to him, I want to wait a couple of weeks, his, his comment was, But you do realise your baby might be alive when they’re born?

Which was like, ‘Yes. And that seemed to be a problem, Well, that means you’ll have to get a birth certificate, and he didn’t for one minute seem to think that I wanted, I wanted a birth certificate. I wanted my baby to be alive when they were born because I wanted them to die with me, and he didn’t seem to have thought about that.

And, you know, I can understand that unless you’ve been in that situation you wouldn’t think about things like that, but it seemed like he had a very narrow view of what happens. It’s like, you’ve decided to terminate this pregnancy so ‘let’s just get on and do it and not think about it, go home and get pregnant again’ sort of attitude.

And he didn’t seem to grasp the fact that this was my baby, and I want this baby but I’d found myself in these circumstances, I want this baby to born alive.

I can remember him (the HIV consultant) saying we did another test and we’ve measured your T cell count, your T cell count is 400, that indicates that your immune system is on the brink. Now I clung to the fact that it took ten years forten years for you to progress from initial infection to AIDS and death. But here was I finding my immune system was already half goneand I was like oh my God, I didn’t have a clue what a T cell count was. And then he said you’ll probably have to start AZT immediately and then it was explained you knowthen I was like out of his office and there was obviously the counsellor who was actually completely different you know, he was much more sympathetic and human. He took some time to explain things and make an appointment, a follow-up appointment for me. And you know I mentioned the AZT and he just said don’t worry about that you know

Mother’ They kept him [son] sedated for about five days and then decided to bring him round again and do another CT scan. He was still fairly agitated, and the CT scan showed multiple infarcts across the entire surface of his brain. Now this was about eight days in to the attack, to a point where I thought in my ignorance that he had survived and therefore he would survive. I thought he was desperately ill, but I thought he was safe. When they had the second CT scan, actually the third, because they took one in the first hospital, but the second one at that ITU, they sent it to the regional centre for an opinion. And the opinion was that he could not survive. But if by chance he did, he would be in a persistent vegetative state.

So a doctor and a nurse took us aside and told us to prepare ourselves, and in a roundabout way asked us if we wanted to turn off the life support. And this was a desperate shock. Because no way had we been prepared for the idea that he would not survive. And the longer he survived, the more likely it seemed that he would. And we came home kind of on autopilot.

Father’ Yes, we had to drive about 12 miles from that hospital to our house. And it was in some kind of odd state. I can’t tell you how I got home.

Mother’ We were just driving slower and slower, just kind of
Father’ But they told us to go home and consider our options. But they didn’t explain to us what our options were. And because my wife has worked in the medical area for quite some time, we could conclude what our options were.

Mother’ Which was do not resuscitate and organ donation, those were the only things I could think of. So I called one of my colleagues, who’s actually a bereavement counsellor. And she came immediately and was very supportive through
Father’ It’s okay.

Mother’ Sorry.

Father’ It was a very black time.

Shall we take a break?

Father’ I think, no, it might be better if we can carry on.

Mother’ Yes. While she was here, the consultant rang and said, No, forget all that. Don’t worry about that for the moment. What we’re going to do, we’ve got a plan. We’re going to put him back to sleep for maybe a couple of weeks and then wake him again and see how he’s doin. And she immediately said, You know, if they’ve got a plan, it’s not as bad as you might have been led to believe. They wouldn’t have a plan if it was that bad. They’d just let it g.

Father’ The key thing was that they didn’t know. They didn’t know what the outcome would be. They’d sent a photograph to a local centre of excellence, who’d gone, Oh, it’s desperat. But they, this particular consultant obviously thought, Well, we don’t know that that’s the cas.

Mother’ Yes.

Father’ We’re not going to give up on this lad ye was his words when we saw him the next day.

Nobody could say, This would happen What they should do is be sure if they say, This will happe that that is the case. If they don’t know they should say, These are the possibilities. And these are, you know, this is the possible outcomes Or, you know, they need to be more careful about saying, Thi

The day that we received the results, I was told that I had DCIS and they explained very briefly what it was. That technically it was pre-cancerous which was a relief and in the next breath they said So we’re going to offer you a mastectomy and that was appalling. Because you assume that if something was pre-cancerous, they can do what I believe they do with cervical cancer and you know just zap those cells.

And I must say the bottom of my world dropped out at that moment, so that was a very difficult moment, from having a month earlier felt completely clear of any risk at all to being offered a mastectomy for something that wasn’t even truly invasive cancer as far as they knew.

And in that fortnight I did a lot of research too on the Web about the condition and realised that it wasn’t cut and dried, that some people were beginning to ask whether surgery was necessary always but that the evidence wasn’t there, no one could actually answer my questions, even when I went back for the subsequent appointment I had loads and loads of questions but they could not be answered.

And that made it even more appalling to think I was going to have a mastectomy when I couldn’t make a clear choice because the answers that I needed – about how long would it take for this to develop, how dangerous are these cells, what is exactly the spread in my breast – none of those could be answered. They could only say We have found what we’ve found, there may be more but we can’t tell until we’ve removed your breast and we can’t tell whether it’s invasive until we’ve removed your breast And that’s appalling and in fact I refused at that point to go ahead. I felt I’d been well railroaded into a surgical procedure and so I said I would wait. Which I don’t think was approved of really, I felt a bit alienated then because people don’t step off the tracks and I said that I would.

So at that point I said that I thought I needed thinking time and sort of set myself a target of getting to Christmas and beyond because that would have given me three or four months to do some more research to think things through to see if I could put my faith in any complementary strategies, to talk to people. And to see a counsellor because I felt absolutely floored by the diagnosis and I thought if I went into and prepared myself mentally then I could, because at that time I was talking about this in terms of, I was talking about mastectomy in terms of a mutilation and I couldn’t see it as, I objected to it being called a treatment, to me it wasn’t a treatment, it was almost the opposite.

And so it’s learning to trust my own instincts about who I am and how I’m gonna respond to things, that’s really important. And if a doctor tells me something and I disagree with it, trusting myself to disagree. And ideally if I do disagree to ask them about it, and to have a doctor that can say, Well this is why I think you should do this. And to treat me like an equal partner in, or an equal player in the endeavour of making my life better.

And that’s one thing that I sometimes haven’t gotten from doctors and usually when I do then I [laughs], I stop, or I don’t do any of the things that they’ve suggested, I might still see them but like, it’s just like, Okay well, if you aren’t gonna give me the info I’m not gonna put whatever this chemical is in my body, cos I don’t know what it’s going to do to me, and you haven’t proven to me that it’s going to actually make things any better. And I know that some medication can make things worse.

It started about 18 months ago when I was working in Washington DC in the States, and I went to a local urologist because I had marginal impotency problems and I wanted him to prescribe Viagra for me, which at the time was difficult to obtain through a GP here. He agreed to do that but then he asked me whether I’d recently had a screening test called PSA and I immediately responded that I’d never heard of PSA and what did it stand for and what was it for?

And I don’t think I really took in what he was saying but I agreed to take the PSA test primarily to humour him rather than because I’d really considered all the risks and benefits of taking such a test. He did examine me with a digital rectal examination at the time and that was normal and since I’d got my Viagra tablets I simply forgot about visiting him. And so I was somewhat surprised about 3 weeks later when he telephoned me about 10 o clock at night at my apartment and said my PSA level was very high, much higher than normal, it was about 9ng per ml and that I should take it very seriously although it didn’t necessarily mean I had prostate cancer and he suggested I have a biopsy straight away. Well I was just about to finish my turn at Washington and go for a month’s visit to Venezuela and a biopsy wouldn’t have been appropriate. But obviously I did feel a great sense of, well fear I suppose, because this was the first intimation that I might have a problem in this connection. I didn’t really have any symptoms and suddenly I was faced with my own mortality. So it was a most anxious time and I remember rushing round to the book shop and buying 4 books on prostate cancer and reading them up and being absolutely horrified about the treatments on offer. Surgery seemed to me more like butchery than surgery and so I was finding it very difficult to sleep at that time.

That decision which I made back in 1981 was the worst possible decision I could have made, I was referred by my GP to an orthopaedic surgeon and because he told me that he thought there was very high success rate for a laminectomy I didn’t question him sufficiently.

I didn’t have either the confidence or really the medical knowledge to and I relied on my GP to have sent me to what he thought to be the most appropriate specialist. I now know that to have a good chance of having back surgery you must go to a specialist spinal surgeon and preferably in the specialist spinal unit but those are in very, very short supply.

I blame myself terribly that I didn’t make those enquiries, I suppose I shouldn’t blame myself but if I could change one thing in my life, if I could go back and rewind the tape, that is what I would do and anyone who has ever asked me about whether they should consider having spinal surgery I have always said to them Please, please educate yourself as to the chances of success, the success rate with the surgeon who will be operating on you, ask the awkward questions and if possible try and avoid spinal surger.

Because I think when I had it done there was a much gun-ho sort of attitude, it’s now I think being appreciated that actually the success is much more like 50% and that’s on a good day with a good surgeon and that if it can be avoided it should be. I mean obviously there are some conditions, some circumstances where people have bowel or bladder involvement, they have to have surgery but if I could go back and change that decision I would work, have worked far longer with specialist physiotherapists to try and strengthen my back, to try and avoid the surgery if I possibly could.

I mean I had had physiotherapy, I had had some advice and nothing that had been done had actually helped me to be fair but if I could change things, I would very much have wished that I could have done that and had that sort of input and perhaps even been sent to a specialist rehabilitation unit where there was specialist knowledge, which is quite difficult to access on an outpatient basis but I’m sure it must exist somewhere. I hope, but I regret that decision terribly and so does my husband. You can’t go back.