Ralph - Interview 60

Age at interview: 69

Age at diagnosis: 66

Brief Outline: One morning Ralph awoke to feelings of pins and needles in his arm and leg. Recognising that there was a problem, he immediately called NHS Direct. Ralph was happy with the quick response, but felt that things fell apart afterward. Since he lived alone and had no social support network (i.e., family to call), he discharged himself from the hospital.

Background: Ralph is 69, retired, and resides at home on his own. He experienced his stroke three years prior at age 66. His ethnic background is White British.

More about me...

 

Ralph is 69, retired (unwillingly as a result of his stroke), and resides at home on his own. He experienced his stroke three years prior at age 66. The day before his stroke he described feeling a bit wobbly in the shops. He returned home, had dinner, and went to bed early. He woke up the next morning with ‘pins and needles’ in one arm and leg. Immediately recognising that something was wrong, he contacted NHS direct. He was informed by the dispatcher that he had likely had a stroke and that an ambulance would arrive shortly. The ambulance arrived quickly and whisked him off to A&E. Ralph was impressed with the quick response and recognition of his stroke by multiple parties, but noted that his care immediately fell apart afterwards. He remained in A&E for some time before receiving any treatment. He eventually transitioned to the Stroke Ward, and later to a rehabilitation unit, where the care was no different than the other hospital units, (besides the presence of other stroke patients). He was surprised by the poor diet and lack of rehabilitation.

 

Ralph has no other health conditions, and was surprised by his stroke given his healthy lifestyle, fairly optimal weight, no other known risk factors (besides occurrence in his family), and was not aware of the significance of a genetic link. There was no mention of risk at previous GP appointments.

 

Ralph had no family or friends available to do instrumental tasks (e.g., pay bills, shop, laundry, etc.) and was unable to get formal support for these activities (e.g., social worker could not go inside of his home without him present or handle money) while he was in hospital. Due to growing angst about the things that had to be done at home, he discharged himself from hospital. He felt unsupported after doing so, and the efforts that were put forward by the formal care system were not in line with his needs. For example, he was given an attendant wheelchair which could not be used as he had no one to assist, and was offered laundry services which he refused as he already had something in place. From this, it was misinterpreted that he did not want any care. In addition to physical and instrumental needs, he experienced feelings of depression, thoughts of suicide, and changes in emotion; thus counselling and emotional support would have been extremely helpful.

 

Despite his functional limitations (e.g., use of only one arm and limited mobility), Ralph navigated on his own, and through trial and error, found a community swimming program aimed for people with disabilities which he rated highly. Other community based programs were inaccessible due to lengthy modes of transportation and timing.

 

Ralph feels that there is much room for improvement including widespread education about risk factors and prevention of stroke, better supported discharge plans (in general and especially for individuals who discharge themselves), and education about medication (side effects and how to take them). Also required is recognition that not everyone has a social support network to tap into. Active rehabilitation, counselling, and support with tasks in the home (e.g., making meals) is required, and in his case, would have been helpful.

 

Although 999 responded quickly, Ralph experienced many delays afterward.

 

So the ambulance crew came very quickly, within about 12 minutes I think. And they were in a hell of a hurry and they whisked me off to the hospital, wouldn’t even let me stop for a toilet (bag) which subsequently became a bit of a problem. I was just in the clothes that I stood up in, that was it. But then I got into the emergency (unit) I was put on a trolley and nobody looked at me, not even in my direction for literally hours until I eventually saw a doctor and she said, “We’ll book you in for a scan about three o’clock tomorrow.”

 

So what was all this urgency about? What’s the F.A.S.T. campaign about? You know. So that was the beginning of a rather unpleasant experience.

 

So continue on with your hospital experience.

 

Well I had my scan and somebody said, “You’ve had a stroke.” I said, “Great. I know I’ve had a stroke, the girl on the end of the telephone line says I’ve had a stroke. The paramedics say I’ve had a stroke. Thank you very much, I’ve had a stroke. So, what do we do now?” I was put on a general ward for about a week and then I was finally moved to a stroke ward, which was absolutely no different except that there were some other stroke patients there.

 

It was about a week before I had any kind of treatment, even medication. The likely scenario was never discussed. I had sporadic and brief physio sessions, but given no exercises or warnings about the effects of prolonged bed rest, etc*.

 

I never got off the ward until I was transferred to the stroke rehabilitation unit... so called. (In) which I had no rehabilitation whatsoever [sighs]. I’m sorry to be negative but there’s very little positive to cling onto. For instance, just simple things like, I mean, for a start I was kept in bed, flat on my back. And if I wanted to go to the toilet or have a wash or anything I had to have somebody wheel me there. I mean, after a while I got to the point where at least I could go to the bathroom on my own, if they would leave me alone. I had to appeal to the consultant and say, “Look, I can, I’m OK to do this on my own. And he persuaded them to let me do it, because I found it difficult doing things with people standing around watching me. So it was very unpleasant and there weren’t even practical considerations like, I mean, I had bladder and bowel loss of control (as you do). I was, as far as you can possibly get from the bathroom, in an open ward. I mean, surely, it doesn’t take a great mind to say, “Maybe we can move him down to (be), near the bathroom. Or maybe we can put him in a side room where, where he can take himself to the toilet.”

 

*text added after the interview by Ralph.

 

Ralph talks about feeling depressed after his stroke and describes it as a normal response to a...

It’s something that’s bandied around as if, “Oh you might suffer from depression if you’ve had a stroke.” Well, you might. But it’s not so much the clinical effects, it’s the fact of having your life hit the buffers. (You’ve died without dying*).

 

I mean, there’s nothing wrong with that, there’s nothing sick about that. I mean, anybody can be depressed about anything... It doesn’t mean that they’re depressive. It just .....means they’ve had an enormous problem to deal with in their life. I mean, if you lost a baby or something like that ... you would be depressed. Not just clinically but the (actual) trauma.

 

Exactly.

 

And I think that people need to remember that’s the case with stroke. That people are depressed because they’re shattered. (They want support not antidepressants*). They have to adjust to this enormous, profound... (sudden) change.

 

*text added after the interview by Ralph.

 

Ralph discharged himself from hospital because he was concerned about the tasks that needed to be...

So how did all this make you feel? What was going on inside your head when this was going on?

 

What’s going on in my head by now or by then, is that I still had this meeting from somebody overseas to attend to. I had banking to do, I had rent to pay, I had all kinds of things I had to deal with. I mean, life goes on. Either you die, which I very much wanted to do, but I couldn’t figure a way to do it because I couldn’t get into a car and do the exhaust job on myself. So I thought, “If I’m going to live, then I’m going to do the best I can with it.” But where was I going?

 

You were talking about how it was making you feel and you were thinking about, you know, things that you had to get done but ...

 

Oh, how did I feel, yeah.

 

... you couldn’t, hmhm.

 

So, I had to deal with all this stuff. So I eventually got a hospital social worker to come... and I explained some of these things to him. I had to move my car for instance. It was (on the side of the road and) being vandalised. I had to have it moved. So all kinds of things like that, just practical issues. So I got to this guy and I explained to him the problems that I had and it seemed everything I brought up that I need money, I need to do banking, I need to pay my rent, I need to blah, blah, blah, he’d just say, “Oh we can’t touch money. We can’t go in your house.” And I’m like, “Well what can you do then?” And in the end, nothing. So I said, “Well I need to be discharged by...” whenever it was, 7^th of September or something. And time went by and nobody said anything and eventually it came to that date and they were aware of the situation, I said, “I need to leave by the...” whatever date it was. But the date came and there was no discharge and no arrangements so I said, “Look, I have to leave. I’ve got people coming, I’ve got, these things to deal with.” They said, “Well you’ll have to discharge yourself.” And I discharged myself. And that was it. That was a really bad mistake. I mean nobody was (or) seemed upset... you know, bothered by it particularly. I just guessed that it was a formality, they just wanted to clear themselves that I had (to) discharge myself. But it seems that a lot of people were very upset by this and I was virtually excommunicated. You know, it was as if I was saying, “I think your hospital is rubbish.” I wasn’t saying that I’m just saying, “Look, there’s stuff I need to do. There is nobody else to do it.”So I was discharged. I was wheeled from the ambulance into my house, the door shut and that was it.

 

Wow

 

[laughs]

 

So ...

 

That was it. I phoned up and I phoned Age Concern and they helped and eventually I got somebody to come out, because I naively thought that in these days we have things like care in the community and support systems in place.

 

And I thought it was just a matter of plugging into all those. I found they just weren’t there. And a lot of it seemed to, be because I discharged myself. The hospital could access these things but I couldn’t access them.

 

Ralph feels that care providers should not assume that family and friends are always available.

Are there people that you can count on if you need something that, are there people you can call who can support you?

 

No-one. No-one. So...

 

Any family?

 

No one. It was worse than... house arrest.

 

It was like house arrest only I wasn’t allowed visitors.

 

I think even if you’re under house arrest you can have ...

 

Do you have any family?

 

I have no family.

 

No family?

 

Partly because a lot have (either) died or...(emigrated)... gone to Canada (long ago) or... [smiles and chuckles]... in the US or New Zealand or, all over the place. Or, you know, or they’ve died.

 

So, do you have any children?

 

No children. (No one).

 

No children. No. So how has that shaped your experience?

 

Oh, very much so. Partly because this perception that other people have. I (am) constantly looking at commentaries about health conditions on the computer, or leaflets or whatever. They talk about “get your family to do this, get your family to do that”. Hello, hello. I haven’t got family. What about me? And that’s a, familiar thing that you’re supposed to fit a certain profile and if you don’t... then... there’s no answer.

 

No, you’re right.

 

So ...

 

Hmhm. Wow.

 

It’s been very tough but... there again, that’s how it is, so just have to live with it.