Peter ' Interview 33

Age at interview: 62
Brief Outline: Daughter Olivia died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of Motor Neurone Disease remained uncertain, as aspects of her condition were unusual.
Background: Peter is a consultant (heritage projects), married, father of Olivia and one other grown-up daughter. Ethnic background/nationality' White British.

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Peter’s daughter Olivia had completed her training as a nanny and had started her first probationary placement when she began to feel pain and weakness in her left leg, around Christmas 2005. By February she had given up her London placement, and got another placement with a family she already knew. She went to see a GP, who thought she was depressed, but also suggested she see an osteopath. When there was no improvement, she was referred to a consultant neurologist. The consultant suspected Motor Neurone Disease (MND), but referred her for a second opinion as it was an unusual diagnosis for someone so young. (Olivia was only 22 at this stage).

By now (summer 2006) Olivia was having difficulty walking or getting upstairs. The second consultant was unsure if MND was the correct diagnosis, but after further tests ruled out other causes it seemed this was still the most likely explanation. The uncertainty over the diagnosis made it difficult to get the local community healthcare team near her parents’ home mobilised. The local GP felt chronic fatigue was more likely, and everyone including Olivia wanted to believe it was something other than MND.

Olivia’s condition was deteriorating so fast that it was hard to get equipment organised at the time she needed it. Her parents decided to pay for a downstairs bathroom to be installed, rather than wait for social services to arrange it. Peter and his wife often found they were having to do things for Olivia themselves and did not feel the professional services were able to act quickly and flexibly enough. The usual MND Association support groups also did not seem to be appropriate, partly because she was so young and partly because her symptoms were changing so fast.

Olivia continued to weaken rapidly, although occasionally her symptoms seemed to improve before getting worse. A friend recommended Chinese medicine as part of their efforts to check for other possible causes. She showed a temporary improvement but then continued to weaken again, but her speech was never affected. In the last two weeks of her life her parents would have liked home nursing support, but none was available and nobody seemed to recognise quite how quickly her breathing was worsening. They were worried about how they would cope over the Christmas and New Year holidays. Olivia died at home on 29 December 2006. Looking back Peter feels strongly that the NHS and social services need to improve the coordination and responsiveness of services to support people with rapid progression.



Despite having a wheelchair and a hoist, there were often circumstances in which Peter and his...


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


Peter looked on the internet and found a vast array of information, which he suggests should be...


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. 


ItÂ’s important to remember that health professionals may not have come across someone with this...


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.


Although it has been difficult at times, Peter has kept busy socially. He believes it opens up...


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.

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