And I think that’s another lesson that we would have is that, that, you’ve just got to keep your, your head together and keep thinking because you can work out how to overcome a lot of the problems, much more easily than people who, are not familiar with the situation with the circumstances of this particular disease, in particular this one it’s so rare it’s unlikely in their professional lives they’ll ever come across it again. But who really are applying standard remedies to things that don’t need standard remedies. You really need to sit down and think what the problem is, and then try and find a tailored solution to it, and so that’s what my wife and I were doing all the way through.

Okay, is there anything, any advice or message, messages that you’ve learnt from this that you’d want to give to other parents who are in the same situation?

Yes, it’s such a rare situation and the onset of a, other forms of Motor Neurone Disease are quite different to this one. But yes, be alive to the possibilities. Use whatever levers you can to get things to move quickly in the early stages, to get the diagnosis. Recognise that if it is, if the symptoms are progressing in terms of their demobilisation of the patient, then get a step ahead of it and make sure that all those people, the professional team, are actually on your wavelength as far as that’s concerned. Make sure that people are thinking as quickly as you’re thinking. they’re busy people. They’ve not come across this before. The chances of them having come across it before are very remote, and you’ve got to make sure and hopefully, you know, even using this evidence that I’m giving at the moment to, to throw in their, well not throw it in their faces but to use this as a guide.

Make sure that you’re getting everything in place so that you’re in control of the situation rather than being a victim of the situation, and, it’s very important that you do that. Make sure on the medical team that there is somebody who is in charge, and that they are reporting back to you and that you can report to them on any occasion and hope to get a response from it, whether it’s the GP, whether it’s the local hospital, whatever it is. There’s got be somebody who’s got to be able to pick up, in a professional manner, the telephone and tell other people to do things.

And to make resource decisions, and I fear in this case that, resources were driving the decision making process rather than the other way round. And, given the, the shortness of the onset of the illness, this shouldn’t have been a feature. The fear was that this might go on for a number of years and if they committed to a certain line of support they would be committed to it for a long period of time. If these symptoms are showing in the way that they did in this occasion, throw the resource issue out of the window.

Is there anything as parents that since, since Olivia’s died has, that has helped you, and that you would think parents might find helpful to be able to cope?

Yes we have gone out of our way to distract ourselves basically, and so we’ve kept very busy. And that’s not just keeping busy at work; it’s keeping busy in your social life. We made an early decision that we wouldn’t become hermits and although, painful though it may be as I’ve indicated in talking to people about it, once we started going back out to social events, and once we started having people back into the house, which I guess we never really stopped doing, even very soon after Olivia died, we started to get that feeling of support which helped us enormously and continues to do. So we kept ourselves busy. We always had things to look forward to. They don’t have to be expensive things, I mean I’m not talking about going on expensive holidays and things like that, just events, things that you were going to be doing, going to the, to a concert, going to the theatre, going to visit friends, going to a gallery or something. You know, they don’t have to be expensive things. But things that you are, to start with making yourself do. You don’t feel like doing it, you’re making yourself do it. But in doing it, you’re actually opening yourself up to, good events to, it’s something that’s bolstering you emotionally, and, and things which put the loss of your daughter into perspective. You will never lose the love that you have for her. You will never fill that gap that she has left, but you learn to live with it and to appreciate it.

And so we continued to have a, a reasonable quality of life moving with the aid of the wheelchair, with the hoists, with personal lifting, right through until the time Olivia died. But to do that, my wife and I had to break all the rules. We had to lift her on all occasions. So there was no way that we could use the mechanical lifts to get her in and out of the car, to get her to a hydro pool. We, there were, we had all the OTs and physios coming out of our ears and they’ve, none of them could come up with a solution other than my wife and I lifting my daughter. I’m sixty-two, my wife is ten years younger but in any of those cases I mean I’ve got the strength and she hasn’t, so I was finding it was quite I suppose in a sense it was amusing but also frustrating that we’d have a very able bodied helper coming in to, to assist, you know, the Social Services helper coming in to assist. But when Olivia needed to be moved from her bed to the wheelchair I had to come and lift her. Because we couldn’t, we, the hoist wouldn’t get in we had one of these mechanical ones as well as the, the fixed one and we couldn’t actually get it into, alongside her bed to actually get her from the bed into the wheelchair. So whenever we were doing any lifts at all my wife and I would do it. We became quite proficient at it, but our backs did suffer a little bit, but they’ve recovered now. And to any parent I would suggest that, you know, for quality of life you’ve got to look at ways that you can do that. Even to the extent of when she went back in for further checks into the [hospital] my wife and I were actually lifting her in the hospital, much against the advice of the staff, in particular the OT staff, in the hospital. But it was the only way that we would ever get her from place to place.

An example of that was when we had to go back for a CAT Scan and we said, Well we’re staying with friends near [city] if you don’t have the ability to have a bed downstairs or a bathroom facility downstairs for Olivia, so can she come in to the [hospital] for the night before So we delivered her to the hospital the night before so that she could stay there and the plan was that we would all meet up at the [another hospital] where this mobile CAT Scan was the following morning at nine o’clock. Well we were just driving into the hospital [second hospital] and we got a phone call from the [first hospital] saying, Awfully sorry we haven’t been able to get an ambulance and we can’t get a suitable taxi to get the wheelchair in, could you come over and collect her By this stage we were well late on our appointment for this scan. But we did, we drove through [city], right across the other side, we arrived there. There was no lifting kit available instantly in the ward and we had to get her across to the [second hospital], so we simply said to the ward staff that, We’ll do it. We’ve been doing this for four months now, we’ll just do it So we got her off the bed into a wheelchair and we got her out of the wheelchair into the car, as we had been doing for some months. We got her over to the other side and, and, to cut a long story short, it would not have happened had we not done that. And so we found ourselves in the position of making decisions about our own health versus our daughter’s health and in those circumstances there is no decision, and you just go ahead and do it.

I could go on for probably another twenty minutes about how they wouldn’t actually eventually do the CAT Scan until we threatened to call the local newspaper, and to get very senior management involved, and eventually, again, my wife and I were able to lift Olivia onto the scan bed, which then went into the scan and came out, despite the radioactive warnings that we’d been given and all of that, because

Well the internet’s a Pandora’s box, isn’t it? I mean you could, you could, you could get anything or nothing from it. I mean the, the descriptions that other people put down vary hugely. The association of particular diseases with particular symptoms, I mean this is, this is why you need the professional. This is why the health service is there. I mean the internet’s fine but you could go down so many rabbit holes and you could, you could get false hope or you could, have your hopes dashed by reading things. it’s not specific enough, particularly in this case, which is such a rare case, that it just doesn’t fit. So you can’t, but yes I mean in a sense that one Googles this and Googles that. it’s, the internet’s terrific but it doesn’t tell you very much. I learned a lot more about motor neurone disease, and I learned a lot more about physiology and I learned a lot more about the National Health Service, in the course of eight months.