Mother’It’s wonderful to say that in fact hes so very much himself now. Some of our friends find it actually quite difficult to believe that hes had any problems. And he himself regards himself as better now. We can see that there are still a few little, actually very minor things. He suffers from word blindness, in that he will say, ‘It’s on the tip of my tongue. Which we all have to a greater or lesser extent. But it’s quite frustrating for him. And he says that he repeats things. But we haven’t noticed that. Were not particularly aware of that –

Father’No.

Mother’But his own assessment of himself is very interesting. And they come back with a psychological assessment of him every six months to show how hes progressing. They say that hes thinking a bit slowly.

Father’But he doesn’t feel that that’s the case. He feels that hes thinking okay, but it’s just expressing himself that’s the…

Mother’Yes, absolutely. And they say hes hopeless at maths. But he always was.

Father’He always was. The one difficulty that he suffered from being in Intensive Care specifically was that he was catheterised for a very long time.

Mother’Yes.

Father’And this has caused, well, for quite a long time it caused quite a difficult urinary tract issue, in that he couldn’t empty his bladder properly. So –

Mother’He had a stricture.

Father’So he was needing to go to the toilet every half-hour.

Mother’Half an hour.

Father’Which made car journeys more than difficult. Subsequently hes had a minor operation to have that sorted. And that seems to be working very well at this time. So hes pretty much back to how he was. He visits friends. Obviously someone has to take him and pick him up at the moment, but…

Mother’Well, the friends are quite good at ferrying him about as well.

Father’Hes been to parties, hes going to weekends away. Were going to a big folk music festival in a few weeks’ time, where hell be, which is where he was just before the illness last year. So all in all hes –

Mother’Hes made a remarkable recovery.

Father’A miraculous recovery. Allowing for the fact they said to us, ‘Hes going to be a vegetable for the rest of his life.

Mother’Yes. And I must say that there was at least one nurse, if not two or three, on ITU who said, ‘Look, don’t look on the black side. Try and stay positive. We have seen things that are nothing short of miracles. And you cling to that. You really do.

Mother’My GP said I had post-traumatic shock disorder and sent me for counselling. Which has been very, very helpful. And I just have to adjust my way of looking at it. It used to amaze me that you could see, like old soldiers who’d fought in the First World War, and as 80 and 90-year-olds they talked about it and they cried. And you thought, ‘Do you never get over these things?’ My counsellor said it’s like, you remember a kaleidoscope that you used to look through when you were a child? If you get a particular pattern that triggers this, years later if you see that pattern, you will still do it. And theres no way round it. But what you have to look at is the fact that were not there any more. We have moved on. And to keep a grip on where we are now. Yes, it was awful. Yes, it was a nightmare. It was, I’d always been terrified of meningitis. Working in the healthcare field I’d always been slightly nervous, you know, if we had patients in with meningitis, to think, ‘Can I transport that home?’ And, you know, I would talk to my consultant about it and shed said ‘No, you’re okay, you’re fine. It was always the one great fear. So, there we go.

Mother’As far as advice to parents in a similar position to our own is, ‘Just keep demanding information. You won’t necessarily get it volunteered. It just so much depends on who you’ve got looking after you and your son. Some of them are lovely. The nurse who took him the night that he was put in ITU actually came to me at one point and put her arms round me and said, ‘How are you?’ Which of course was enough to make me burst into floods of tears. But I was in a terrible state, and she was the only one that was interested. And she saw the connection between the patient and the family, and knew she had to look after all of us.

A lot of them were just focussed on the patient, and a lot of them just didn’t want to be there. And so if you’re worried, talk about it. If you want to know, ‘What’s the significance of this number? Why is it fluctuating? What do I do if’?’ And his tracheotomy fell apart, his tube fell apart. At one point he was getting oxygen through, and it fell to pieces. And there was nobody there. I had to put it back together. I felt I could do that. I didn’t panic. I could put it back together. But I mean the fact was he was breathing for himself. And it’s hard to remember that he wasn’t actually going to suffocate if I hadn’t got this back, you know. It was helping him, but it wasn’t crucial. But, ‘How crucial is it?’ You need to know.

They won’t tell you because they do it all day every day. And to them it’s just putting a breathing tube on. It’s like when he wanted, when he got phlegm in his tubes, they had to put a, a tube down to clear it. And this is terrifying. It’s absolutely sort of, ‘My God, what are they doing to him?’ But you get used to it after a while and think, ‘Right, okay, it’s just making him cough. It’s just making him clear that. But they don’t necessarily explain it to you. They just do it. And you see your child sort of going into some sort of spasm and think, ‘My God, what’s going on?’ So I mean don’t suppress it. Demand to know, ‘What is going on?’ And let them tell, make them tell you. And if that won’t do, go higher. And if that won’t do, go higher. Theres always a duty manager on call 24 hours a day. If you’re not getting answers, demand to see that duty manager and say, ‘Look, I’ve got to know what’s going on.

And don’t worry about making a fool of yourself. Don’t worry about putting your hands on your hips and yelling like a fishwife. It doesn’t matter as long as you get the information you need.

If someone says, ‘Oh, this is hopeless’ don’t believe them. Until your child is dead in your arms, don’t believe them. You’ve got to stay positive. And you’ve got to keep on fighting. Your patient will fight. The will to live is very strong, especially if they’re young.

Mother’He was also nursed by healthcare assistants. Again there was one who was very good. And others who just, ‘Oh, don’t you want your cup of tea, dear?’

Father’There was a –

Mother’And they just left him.

Father’There was a tendency for them to bring him a cup of tea and leave it on the table. And obviously he couldn’t move, so he couldn’t feed himself. Therefore it got cold –

Mother’The cup of tea got cold.

Father’-and then they’d take it away.

Mother’Yes.

Father’The outcome of this was that in fact we were, although the visiting hours for the ward were quite limited, like in the afternoon, we actually had permission to go in at any time to feed him and to help them with his care.

Mother’At that point he was still quite agitated. He couldn’t vocalise except to growl or roar. So when they tried to do something with the catheter he would scream the house down. He wouldn’t allow them to feed him. So they said would I go in and do lunch as well as dinner. Which of course I would. Because they’d at that point taken out the nasal-gastric tube, but he was only adjudged by the speech therapist to be able to swallow liquids. So he was being fed milkshake and things like that. So the weight continued to plummet. And it was only as days went by when he was just fed liquid, and then days went by when he was fed mush, until he got on to some proper food. And then I could start taking food in. Because the food was abysmal. The nursing was abysmal. The hygiene was utterly abysmal. We complained to the nursing staff about the fact that I could leave at 8 oclock, 9 oclock at night, having fed him, changed him, washed him, got him comfortable and settled, and go back at 10 oclock the next morning to find nobody had washed him, nobody had given him anything to drink, nobody had been near him. They hadn’t changed him. Nothing.

And when I said to the nurse-in-charge or the staff, the sister, ‘Look, this is not acceptable she said, ‘Oh, but hes so sleepy. So we thought wed leave him till you got here. So he was eight weeks on that ward. And every day, every day, I went in before 10 oclock in the morning, stayed till at least 8 oclock at night, and worked as an unpaid healthcare assistant, just looking after one patient, whom I fed, bathed, changed, washed, watered, amused, talked to. And it was hell.

I knew which strings to pull. I knew which bells to ring. I could go to a general manager and say, ‘Look, this ward is absolutely the pits. It’s not good enough. And she severely kicked people. So that suddenly we were told, ‘Well, yes just come whenever you like. You don’t have to wait till visiting time. If you want to come in and feed him, please do. If you want to come in and do this, please do. And it was because I knew who to turn to and say, ‘Look, this is just not on.

Father’I think that’s the thing that maybe someone needs to think about is, that step from Intensive Care to High Dependency is quite small. High Dependency to a ward is just abandon.

Mother’Yes.

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Mother’And it was noisy and it was hot. But we did have wonderful moments. There was one Saturday morning, we had the Patientline television thing going. And I was tidying his locker, and I heard him speak. And he shouted at the television. Which apparently is not unusual. ‘Do I have to watch, do I have to put up with this sort of rubbish?’ or words to that effect. And I was so stunned that hed spoken that I didn’t really take in what he said. And I then tried to get him to say it again. And he wouldn’t, or he couldn’t. And it was a long time before he really started speaking. And when he did, he actually shouted at another patient to, ‘Shut up. Because there was an old man who was gabbling all the time very loudly. ‘Shut up’ he said.

In the end with physiotherapy, he had a bed which they’d kept the sides up, because he was rolling about, thrashing about. And they had to get bumper strips, like they got for a baby’s cot, to stop him banging his head on the side. But they didn’t, either the sides or the bumper strip, didn’t reach the bottom. There was a gap of about 2 feet. And he, once he was moving around in the bed he was shuttling down to these gaps. And it was quite clear that sooner or later he was going to try and get out. And so in the end it happened that we were there, the physiotherapist was there, he shuttled to the end of the bed and stood up.

Father’And when –

Mother’I was in front of him. And I went, ‘Come on then. Come on. And he walked.

Father’And he didn’t just walk actually. He strode off across the ward and we couldn’t keep up. And so

Mother’It was wonderful. Because wed not known if he was going to be in a wheelchair for the rest of his life. And all these things just went. And they weren’t important any more. We didn’t need to worry about how we were going to modify the house for a wheelchair. Because he was walking.

Father’Then we had a rather strange incident very shortly after that, in that he could now walk, and we were taking him to the ground floor of the hospital where there was a cafe, in a wheelchair at this point, just to get a cup of tea and show him something outside the ward.

Mother’Just give him a break, yes.

And how long had he been actually lying down? A month in Intensive Care?

Mother’Yes, and then –

Father’And then probably a good three weeks –

Mother’– two to three weeks.

Father’– in the general ward.

And he was able to walk?

Mother’Yes.

Father’Yes.

Mother’They came and did an inspection. The psychologist and the occupational therapist came and did an inspection of the premises and judged that he would be okay. But no, they weren’t coming to the house. And I don’t really think, I don’t see what they could have done.

Father’I think it would just be so dependent on the case in question.

Mother’I was a little nervous I suppose of having him home. You know, supposing he wasn’t coping? Supposing he wasn’t well? But the rehabilitation centre had made it quite clear that they would have a bed the following week. If we weren’t coping, they could take him. But I mean he just slotted straight back in. It was, it was brilliant. So, no, they weren’t coming to the house. I think they would have if wed needed to.

Father’I think it would be different if thered have been a higher level of nursing care required. Then the pressures on us would have been much higher.

Mother’Well, then he would have been residential in the care home, and that would have been appropriate.

He then went into intensive rehabilitation in November, and he came on by leaps and bounds. The only problem with that area was that they didn’t have a speech therapist, and speech therapy was what he needed more than almost anything else. Physio was very important and he got a lot of his coordination back during that period. And he also gained weight and built up his muscles, after the wasting away in ITU. But speech therapy was quite an issue, and we did as much as we could. And to be honest the psychology staff there did what they could to provide some level of speech therapy, by talking to colleagues and work from the Internet and from books. They went through stuff with him. And it helped. It did help, but he really did need speech therapy on a formal basis. Which he is now getting. Hes transferred to a community unit, which again is an adult head injury unit, which deals mostly with stroke victims or road traffic accident victims. But it’s been helpful to him, and hes had a lot of education as well on head injury and the results of that, cognitive impairment and the results of that as well.

Would you have found it helpful to talk to other family members, other parents who had been through something similar at that time? Or it was too soon?

Mother’I think probably it might have been helpful. If only because they could have given us an informal view of what we might expect and what sort of questions to ask. And with that in mind I have volunteered to the sister of ITU to say, ‘Look, if you get a similar case and I can help, I’ll come over and talk to them. Because one isn’t in the uniform and one isn’t a professional and one isn’t so necessary pushed for time because, you know, ‘I’ve got other patients to see. You can just sit down with them and say, ‘Look, what you need to think about is this. And talk to them. ‘If you want to ask these questions, have you sorted that out? Have you thought about this?’ I think that could be very, very helpful.

At what stage, everyones different, but for you, at what stage would it have been helpful to talk to some, have this conversation with someone?

Mother’Probably quite early on.

Father’At any time actually.

Mother’Yes. I mean maybe not in the immediate crisis period.

Father’We do understand that the medical people have to be very, very careful about what opinions they give.

Mother’Yes.

Father’Because they are, you know, were turning into a society which will go into litigation.

Mother’Yes.

Father’And there, you know, there are rules under which they have to operate. Obviously people that have been through the process aren’t giving medical opinion. Therefore, they, it’s just a sort of supporting mechanism.

Mother’Yes.

Father’We understand that nothing anyone says is going to make a blind bit of difference to the outcome in our case or in most cases. But just having somebody that’s been there and knows just how gut-wrenching it is.

Mother’That can help you stay positive.

Mother’The other thing is, to be told to, ‘Go away and consider your options’ is not helpful. What we needed to know was what the options were. Now what they were saying was, ‘Can we turn off the life support?’ But they didn’t say it. Now I’ve just said they shouldn’t give us both barrels right between the eyes, but also they shouldn’t hint at things that you don’t understand. You know, ‘What are my options?’ ‘Well, keep him going. Or turn him off. Okay, well, immediately that option was, ‘Keep him going.

Father’I mean we were very –

Mother’Because, and we talked with our friend, that said, ‘Whatever state he comes home in, hes still our son. You know, if he dies, that’s his fate. But if he doesn’t, whatever state he comes home in, hes still our son. And absolutely no way would we countenance turning off the life support or anything of that sort.

Father’And it was the wrong timing. That wasn’t the appropriate thing to think about at that point. He was still under enormous quantities of morphine.

Mother’Yes.

Father’And every time that they took him off those drugs he was breathing on his own. So he actually didn’t need life support, except that they were sedating him. So he wasn’t in a position where, had they have taken away the medication and taken away the life support, he would have just died. Because he was breathing autonomously on his own. So inappropriate conversation there I think.

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 were going to do, weve got a plan. Were going to put him back to sleep for maybe a couple of weeks and then wake him again and see how hes doing. 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 go.

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 desperate. But they, this particular consultant obviously thought, ‘Well, we don’t know that that’s the case.

Mother’Yes.

Father”Were not going to give up on this lad yet’ was his words when we saw him the next day.

Nobody could say, ‘This would happen. What

Mother’He was in a side room, because obviously once they concluded it was a bacterial infection then they went into barrier nursing, and we had to tog up in aprons and masks and gloves. And that was very frustrating because I couldn’t touch him.

Father’The nurses especially were very communicative about the procedures that they were carrying out. In Intensive Care theres a tendency to watch the numbers on the monitor. And every time anything changes you think, ‘Oh, it’s changed. And they set the alarms, so that they go off. And so theres this tendency to sort of think, ‘Oh, the number’s changed. Something should happen. But they’re much cleverer than that. They understand that you need to give a time for things to settle down.

Mother’Yes, but we spent days watching the numbers, absolutely panicking if his temperature went up or his pulse went up.

Father’The situation was that, it’s very difficult now to remember exactly what happened on what day. The day after he was admitted they tried bringing him round from the anaesthetic, well, morphine predominantly. And as he started to come out of that sort of haze that one has, he was very agitated and becoming more and more agitated. And obviously that was quite a low point too, because you sort of kind of felt that maybe hed be a bit better. Because of the nature of the agitation they decided to do a further CT scan. Which showed extensive swelling. And the conclusion at that point was to re-sedate him and to leave it a bit longer and see how things would go. I can at this stage still be quite confused about what happened exactly when during this process.

Mother’Yes, absolutely. It runs together into one great big nightmare.

Mother’The first outing from the ward was actually while he was still on HDU. One of the nurses there took quite an unconventional line with her patients. She was an Army Reserve and shed been out in Bosnia and all sorts of places. And so she was a bit more sort of gung-ho. And she said, ‘Oh, to hell with this. Well just put him in a wheelchair and take him outside. And it was by then September, but it was still, the weather was lovely. And she just wrapped him in a blanket and sat him in a wheelchair and we took him outside. And he just sat and watched cars parking and people walking by. And then he saw his physio up on the stairs and she waved to him. And he followed her with his eyes. He couldn’t wave at that stage, he couldn’t move his arms. But this fabulous sort of gung-ho attitude of this nurse, said, you know, ‘Oh, to hell with this. Well take him out. And it was wonderful. I mean all this stimulation was just bringing him on and bringing him on. She cut his hair, she cut his beard, because he ended up with a beard like an Old Testament prophet. And so she trimmed that very nicely. I took his beard trimmers in and she did that for him. The next day we came in and found someone had trimmed him to a goatee, and the day after that he had just a moustache. Which was, you know, patient abuse [laughs], because the guy couldn’t argue. They were just using him as a model.

Mother’Emails were very important.

Father’ Yes.

Mother’ I used to come home at 10 and grab something to eat and then I would send out an email. I had a circulation of, you know, it was, well, it was fifty people, because it won’t let me do more than that, just to say, you know, ‘He did this’ or ‘He did that. And I used to get all these messages back. Lots of people knew people who’d had meningitis. And they were saying, you know, like, ‘Five year’s later you’d hardly know. You know, you can talk to them. And he doesn’t remember this. But apart from that hes just like everybody else. And that was hugely supportive and very encouraging. And my sister was on the phone sort of every week, just for a bulletin. And, yes, friends and even people wed actually lost touch with, somehow the grapevine spread around and we got emails. And their emails were wonderful. And I’ve still got them all.

Mother’Predominantly the nurses were brilliant. There were one or two who either seemed very brusque or very slack. And we actually had occasion to complain about one to the nurse-in-charge, who was actually lying about his condition. She said that he squeezed her hands. And he didn’t. He wasn’t squeezing hands. He wasn’t cognisant in any shape or form at that stage. And quite why she had to embroider her findings and tell something that wasn’t true, I don’t know. As I’ve said, I had quite an extensive medical background, and I was reading her notes. And she hadn’t written them up. She hadn’t written any notes. And they were doing over twelve-hour shifts. By the time we finished talking to the nurse-in-charge her notes were all made up. So she had just recalled readings that she took at 10 oclock that morning. And this was 11 oclock at night. So I was very unhappy at this.

Father’But that was one particular nurse. The others were all excellent and we can’t complain about them at all.

Mother’Well, there was one other that was a bit slack, obviously didn’t want to be in the room. I don’t know if she wanted to, they had a big ITU with about seven beds in it and then two side rooms, and maybe she wanted to be out with her colleagues rather than stuck in the room with the patient. But it just seemed that every two seconds she was off and away, and we were left looking after. And the other thing that worried me was that the patient in the other side room was MRSA-positive. And when this nurse went for a break, that nurse looked after both rooms. And there was no hand-washing. Yes, they wore gloves, but they’d go from one room to the other quite quickly. And in fact subsequently our son has been found to be MRSA-positive. And all I can say is, ‘I’m not surprised. And good as most of them were, one or two of them were lax and sloppy. And as a healthcare professional I wouldn’t tolerate it. And expressing those things to the nurse-in-charge depended very much on which nurse was in charge, as to whether you got a tight response that said, ‘Right, that will stop, that will cease or whether it was sort of, ‘Oh, leave it with me. I’ll take care of it’ you know, sort of, ‘Don’t worry about it.

Mother’Because they [paramedics] were initially focused on a drug overdose, there is some concern that he might have been delayed going onto antibiotics. It wasn’t until they did a lumbar puncture that they concluded that he had bacterial meningitis. In fact it wasn’t confirmed that it was bacterial for about 24 hours.

Father’If not longer, actually.

Mother’He hadn’t taken any drugs. He doesn’t do drugs and we knew very well he didn’t do drugs. He was 28 at the time and a very responsible mature person, very good attitude. Yes, he likes to have a drink, but he never did any sort of drugs as such. I worked in the A & E department of the local hospital and we received a lot of support. People were very communicative. And even so we felt that we sat outside and were desperate to know what was going on. All, every minute we, not knowing what the diagnosis was, not knowing anything that was happening. But we could hear him because he was growling and shouting in his fever. And we both nearly went mad. But they told us as much as they could, when they could. He was there about five hours I suppose before they decided to go across.

Father’I think we arrived at the hospital around about 3 in the afternoon. They finally did a CT scan, sort of 5 oclockish. And it was after 6 before they concluded, they couldn’t, there was no sign on the CT scan of the meningitis.

Mother’No, it seemed quite normal.

Father’So the lumbar puncture, I think we got the results around about 6.30 in the evening. Obviously it’s quite devastating to be told that a relative has meningitis.

They at that point said they didn’t have a bed in Intensive Care at the local hospital and that they were planning to transfer him to a nearby hospital, but that an anaesthetist would go with him and he would be looked after very carefully on that journey. Which was quite a difficult journey. It’s through narrow’

Mother’It’s over the hills and windy lanes. So we jumped in the car and followed the ambulance. In fact we got there ahead of it. Which is not unusual I think. And were shown to ITU.

Father’It was around about 9 oclock at night that he was sort of settled in to a bed.

Mother’Yes, maybe even 10.

Father’9.30-10 oclock into a bed at that the second hospital. We stayed for a fairly short while.

Mother’And there was a very nice nurse that had been put in charge of him. I immediately felt confident that she was totally on the ball. She told us briefly the plan for the night and said we didn’t need to stay, we ought to go home and get some rest because it had been a terribly traumatic day. And such was our confidence in her that we felt we could do that. And obviously they would call us. We gave them all our numbers and everything.