Peter & Olivia - Interview 46

Age at interview: 62

Brief Outline: Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND 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 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.   

Peter's daughter's diagnosis remained uncertain for some time, because she was so young and did...

That was by then the Spring, and that led to a series of tests with the referral from the GP to [hospital] and a series of tests that were carried out there which were all the standard tests that would be associated with a nerve problem which had then been identified. So she had lumbar puncture, she had an MRI Scan, she had physical examinations, and that eventually ended up with a diagnosis by the consultant in [city]. And he said it was, “It is extremely difficult to diagnose this but I can't help feeling that it's motor neurone disease.” But it's so uncertain and so rare in someone of Olivia's age, by then she was twenty-two, that there was, there was considerable doubt and she recommended a second opinion and he referred us to [another city] and the consultant there who we went to see. And that must have been in, by that stage we were through to about July or August of last year, and that meant there had been problems for about a period of probably about six months. 

By then Olivia was finding it very difficult to walk. Her left side was starting to not function particularly her leg and so she was using a stick. And she was finding it difficult to go up and down the stairs, and all in all the left leg wasn't functioning properly. The rest of it was fine but she was beginning to lose a bit of function in her left arm as well. So we went for the second opinion in [city] and the second opinion suggested that it might not be motor neurone disease. It was very difficult to diagnose and that we would need to spend more time to look at it and we arranged that Olivia would go in for a series of tests in [hospital], and she did that and that must have been in August of last year. 

She was moving downhill quite rapidly at that stage although none of us knew exactly what the problem was and the difficult one here, and in terms of other people learning from these lessons, is the speed at which the deterioration took place. The original consultant in [city] said he had seen only once, and only peripheral involved, involvement on his part. He had seen another case in a young female of Olivia's age, but only one in his whole career. And so we all hung on to the hope that it probably wasn't and that there was some other cause and that it might be a whole array of other things and that's what the tests were for in [the city]. 

At the end of those tests most of those alternatives had been dismissed as not being possible and so we were left with the thought this was motor neurone disease and that it could deteriorate very quickly. But it was still not distinctly diagnosed as such, and I think that's the key lesson to learn from this that in circumstances that were similar to Olivia's, we would hope that the professionals could actually say, “Okay, let's take the worst case, rather than the best case, and deal with it accordingly.” Because following those tests in [the city] we came back with possible motor neurone disease and therefore there wasn't a positive steer for the health support team back here in [our county]. We talked to the consultant concerned who was, who was terrific always through this and he actually re-worded a letter, more positively in the sense that it, he said that it is a form of motor neurone, but they didn't know what it was and how long it would last. But the support team at this end really couldn't move at the speed that the disease was taking hold.

They tried Chinese herbal remedies and acupuncture partly to rule out any other problems. It...

In the last couple of weeks, that's as December wore on I think she began to realise that she wasn't going to get better. And one of the triggers for that was that we were still looking for potential ways to test whether it was something else or not. Not to the extent that we kept going for further referrals to other consultants in motor neurone or neurologists but different people were coming up with different ideas. And naturally in our position you follow any lead you can. A very good friend of ours'

'and who does quite a lot of homeopathic pharmacy. She lives in [a city], and her business is in [the city]. So that she knew people and thought that we should try some Chinese alternative medicine because there might be something to do, it might be something to do with her gut, and something to do with her digestive system and therefore we at least could eliminate that by going down the Chinese medicine route, which we did. And she recommended a very good Chinese doctor in [the city], or through a friend of hers in [the city] she knew this person in [the city], who had worked at motor neurone and stroke hospitals in Northern China and was very expert at what he did and so was used to the condition that Olivia was in.

And amazingly her energy levels which by then, this was back in I suppose October, her energy levels were getting pretty low and they were completely revitalised. The acupuncture and the herbs that he was prescribing made a huge change. Whether it was psychosomatic or not, we simply don't know. But certainly the acupuncture was not, and she began to get movement back where movement had stopped. There was no doubt about that at all. 

Whereabouts was that that she got the movement back?

In her arm and legs, and the legs were getting stronger again and the arms were, the hand movement and the arm movement was getting stronger. And so that filled us with huge hope, all three of us, and our friends. And so we went back on two other occasions. This was a week's intensive acupuncture and herbal medicine.

But there are downsides to that in that for every time we went to see the Chinese doctor it was any number of transfers in and out of wheelchairs, in and out of cars, into offices etcetera. So we were using a lot of energy as well as restoring a lot of energy so it was a balance. We did five full days the first time. We did four days the next time and then we did four days on one last occasion. By the end of that last occasion we hadn't progressed at the rate that the Chinese doctor thought that we might progress, in his experience. And he was coming to the view that actually there wasn't a lot more that he could do. And I suppose it was at the end of that last session which was at the beginning of December that we really came to the conclusion that we weren't going to, there was no short term fix for this, if indeed there was a fix at all. And it had always been at the back of our minds that, you know, that it was motor neurone and we were beginning to think that perhaps it was at that stage, all three of us but we kept fighting.

They set up an email group to tell people and keep them informed. It gave them great emotional...

That is one of the hurdles that people in this situation will have. It's difficult telling people after the first diagnosis, and, then it's difficult seeing people after the death. And again we chose to hit it head on, and by telling people by email in the initial, after the initial diagnosis we, we immediately communicated with a lot of people in a broadcast sense rather than in a one-to-one basis. And on a one-to-one basis whenever you met somebody for the first time and you were telling them whatever the news was, you know, originally diagnosis, subsequently progress or lack of it, and then finally details of the death, it was very difficult, extremely difficult. But having told that person once, it then became much easier with that person, or that family.

But we got very strong emotional support from a widening group of, of friends and there was a core group, there must have been, I don't know, probably thirty or forty who I kept in touch with all the way through telling them how it was going, because what we didn't want was to be constantly on the telephone answering people's questions about how Olivia was doing. And the easiest way around that was to actually strike up an email group and I would provide people with information, and they'd come back with ideas and if we were going for consultations, I'd let people know that we were going to [hospital] and that we were looking for, you know, good vibrations coming through and it was a wonderful support for us.

But again if you don't have that peer group which can give you that support it must be terribly difficult to actually emotionally - and I could see because of the tiredness how marriages must be put under huge strain, but because we decided we'd take charge, rather than having, well in the, in the absence of somebody else taking charge essentially that we'd take charge of the situation, we were able to do that. Because we were so involved with everything day-to-day and that we were taking responsibility for it, we could then communicate directly with this group of friends who were able to give us moral support and emotional support. And it was one of the advantages of the modern technology I guess.

Did it enable you to feel in control in any way, because it is so a, it's such an out of control situation?

Yes it did. Although there were always these caveats that nobody was really in control of it, it was the disease that was in control of it and we didn't know which direction that was going. So, it gave us something to fall back on, it gave us, I mean it, it was the true meaning of friendships really, and my wife and I have a very close marriage anyway and we were, we were much stronger between us.

They put in a downstairs bathroom with bath and hoist. Olivia's symptoms were progressing rapidly...

And so we had to get a bathroom installed downstairs fairly rapidly, because although we have downstairs cloakroom we didn't have a bath, and Olivia did like her bath, and quite clearly another decision had to be made about whether it was a shower or a bath, and again with hindsight we made the right decision very quickly. We were told it would take three months to get approval for the planning permission for the bath to be put in and funding from the Social Services and all of that sort of thing, and we said, 'That's simply not acceptable.' So we got one fitted within a week. We actually got it made. We created another room downstairs from a cloakroom area, knocked walls down, put new walls up, put the plumbing in, put a bath in, and were able to cope with that for the next two to three weeks by lifting and assisting Olivia in and out of the bath. But it became quite clear that that was not possible any longer. And so we got a mobile hoist system, through the OT support from the local Social Services, and we from then on hoisted Olivia in and out of that bath until her death at the end of December that year.

With hindsight, as I say, we should have made that decision earlier. We should have decided to put more permanent facilities in very quickly, and the advice that we would give in those circumstances is to ignore all the planning and if people want to come chasing you afterwards they can, but you've got to get stuff there that will make her life or - well, in this particular form of the disease and it's predominantly, in fact almost exclusively, young females, you have to make everything possible to ease the situation of the patient at the time, in our case our daughter. So that's the big lesson.

There was not enough NHS physiotherapy, so he did exercises with his daughter three times a day...

And it was quite interesting on that front, because she started complaining probably in about early November, late October when we had moved her downstairs, and she had the mechanical bed, she started complaining of very sore legs and they were waking, she was waking because her legs were sore, they were hurting. And so, even though she was using the leg lift part of the bed with her remote control, and we talked to the physios about this and they said, 'Well, you know, we'll just do the physio exercises.' And the physios were coming probably on average once a fortnight, and it really wasn't enough and so we were doing physio, and I actually ended up doing physio with her three times a day. Once when she got up and got through her breakfast, once after her lunch and once in the evening before she went to bed. And the leg thing was really very simple. It was the hamstrings, it was really, I mean I'm not a physio, I worked out it was the hamstrings. So we did hamstring exercises twice a day, and the leg problem disappeared. But nobody told us that, we worked it out for ourselves. And I think that's another lesson that we would have is that you've just got to keep 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.

And that actually gave her a comfortable existence. We started being able to sleep all the through the night again because obviously we had a two-way radio system that Olivia could call us if she was uncomfortable. So we used to be waking up two o'clock, three o'clock in the morning, coming down, turning her over, sorting her out and going back to bed again.

His 22-year-old daughter felt a support group meeting was not right for her, partly because her...

We talked to the Motor Neurone Association at an early stage when the first diagnosis came through, and all they could offer at that stage was a group support meeting for Olivia to go to, and that was just not what was needed because this wasn't a long term, well we didn't know what it was at the time. But it was the last thing Olivia wanted to do, to go and talk about it with other people. Now that in many other forms of motor neurone disease would probably be a very good thing to do, and for carers but it wasn't right for us, in this particular version of motor neurone disease because it was all happening so quickly. And others, perhaps even those that had the disease would not understand because this was a one-off in their experience. So that sort of support group, not relevant for this sort of motor neurone disease.

His daughter used to panic about breathing, especially when using the loo, but she could control...

And we were constantly looking for that typical motor neurone breathing difficulty and it wasn't there, except when she'd start thinking about it, and she'd have what we came to term a panic attack. And she started to in particular associate that with going to the loo, and so when she was sitting on the loo she started getting breathing difficulties, for no apparent reason. So we did what we could in terms of making her more comfortable when she was sitting on the loo. We had a commode obviously as well, and she preferred the commode, although it was more difficult for everybody else concerned. She preferred the commode and towards the end we were using the commode almost exclusively.

But it was on the loo that she was having these panic attacks, and she could calm down from them. She could have them on other occasions but again with concentrated breathing exercises she would come down from the panic. Now whether that was just the brain compensating for something that was happening anyway in her, I mean, I'm not a medical person so I don't know quite exactly how it works, but I know that there are some parts of the brain that control our involuntary muscular activities and there are some parts that help to control them if the involuntary systems don't seem to work.

They had to fight to get home visits from the GP when their daughter was dying. Services should...

I think that we should've read the signals. The doctor should've read the signals, the GP. Again it's resource driven and it might be different in different parts of the country. But we couldn't get home visits. We had to fight to get him to come here. We would be asked to take her into the surgery and we said, 'Quite frankly if we have a choice of taking her to the swimming pool or taking her into the surgery, we're going to take her to the swimming pool, because if she's going to expend that amount of energy she might as well be doing something she enjoys, rather than going into a waiting room that's probably full of coughs and colds which might infect her with something she doesn't need at this moment.' 

We eventually got a house visit, only one, from the GP that was dealing with her, and I bullied him, almost had to bully him into coming out, when she was having breathing difficulties the day before she died, and the only reason he came out he was doing another house call which was in his mind legitimate because it was a new patient and it was quite urgent, within the area, and he said, 'I'll call in to see you.' But had it not been for that, he wouldn't have come here on the day before she died, the day in fact that she probably died. And I particularly asked him, 'What happens if we have an emergency?' It was coming up to New Year, and this was on the twenty-ninth of December, and I asked him what would happen over the next two days, if something really did deteriorate, how would we get her admitted to hospital, what would we do? And he said, 'You don't have to worry about that, I've examined her carefully and I don't see any long term problem here.' And that was it, and so my wife and I thought, 'Well, we've done as much as we can here. If he thinks it's okay and it is just a panic attack which she can overcome by people talking her through it, then we'll just have to cope and go through.' But that night she died. So it's difficult.

If we could've done it differently, I think that when the carers - parents in this case - have been dealing with their daughter, or the patient if it's an outside carer, for the length of time that we were, and as intimately as we had been, that if the carer starts to say there is something amiss then the system has to cut in. The system should really react far more rapidly with much more resource than it did. It can't run along tramline's. If people who are, intelligent people have been dealing with the illness over a period of months say, 'There's something not right,' then we should get instant response and we didn't.

They will never lose their love for the daughter, or fill the gap she has left. They decided...

Support of friends and neighbours and family, yes, very important, and it's important that you include them at a very early stage. We also let her former school and her former college know about it all the way through, so that they were kept up to speed and they didn't send us anything that would be embarrassing for them, and I suppose that the reward of that was the fact that probably about two hundred and twenty people turned up for her funeral. And we learned lots of things about her, which we probably wouldn't have known, and nor should we have done had she lived, and how much of a support she had been to all of her friends, and it was, for us, spreading that word and making sure that people knew what the situation was all the time, it had it's reward at the end of the day for us.

That's something you definitely advise other parents to do?

Oh definitely. Absolutely, absolutely. Quite the thing to do.

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 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, it's something that's bolstering you emotionally, 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.

He felt the care package offered wasn't tailored to his daughter's needs as a young person. Paid...

One of the problems with the care package that comes with the Social Services and that's people coming in supposedly to wash and to dress the patient, Olivia in this case, they can't lift, they're told the can't do any lifting. They therefore can't bath properly because it involves lifting. It's a good system for people who are geriatric and who can't do the things they used to be able to do. It's a hopeless system for people who are in Olivia's situation, because you're getting different people in. Each of them have to form a relationship with the patient, and although it's quite possible the vast majority of their patients are geriatric, you get a carer organisation that comes in and starts dealing with a twenty-two year old, apparently healthy young woman, they're not equipped for it, basically, they don't have the right skills. You can't come in with a cheery 'hello dear' and hope that you'll strike up some kind of relationship with a patient, because she's an intelligent girl. And she shouldn't have to explain to each of them in turn as they come in what the procedures are, what they have to do, wash her hair and dress her or whatever. In fact they didn't do any significant washing. They did sort of bed washing because we would bath her once every other day, basically. So we'd go through all the lifting and bathing. It was obviously a very intimate thing and yet it was something that obviously comes naturally to parents.

Swimming helped a lot in the early stages. It was tiring, but being able to move in the water...

The swimming pool was great for her in the early onset, when she couldn't walk any more, because she got that great freedom. She could walk in the pool. And we went to one of the hotel pools that have a spa. And we probably went there on three or four occasions with her, and with friends, because we'd need at least three of us to handle. And that was great, it was really good, because her spirits lifted. She always felt really positive after that, but tired after it. And she went into a bit of a decline but recovered from it after each time because she was using a lot of energy. But the psychological joy of being able to move her legs in the water was terrific. So it was worth the effort to do that.

He and his wife did a lot of lifting. It was hard physically, but as parents they just did...

And so we continued to have 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 had all the OTs and physios coming out of our ears and 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 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, the hoist wouldn't get in. We had one of these mechanical ones as well as the fixed one, and we couldn't actually get it 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 for quality of life you've got to look at ways that you can do that.