Heart failure
Driving, mobility aids and state benefits
People diagnosed with heart failure may be told to stop driving at least until their condition is stabilised. Some people we spoke to had stopped driving completely but others had not because they enjoyed it so much. One man described his car as a lifeline; another said that driving was the only way that he could get out of the house, which was important to him and his wife. Another man said that though he regretted giving up his car he tried to face it philosophically. Being unable to drive caused Mike and his wife to move from the home they owned at the top of a hill to a council bungalow on more level ground and nearer to public transport. He had loved driving and found life difficult without a car.
Is driving important to you?
It is, because it's virtually the only way we've got to go out anywhere. I can go and see other things and we can enjoy ourselves driving, you know. To sit indoors all day long, I just can't do it. I don't want to. Even in the morning there, if it's raining, I still go out for my walk if I can. But when we go out, if we go to [place]... we go to [place], go in the Park and Ride and then it's not a fast walk round, it's a slow walk round. You know, we get round alright, I don't' we don't spend all that amount of time in there, but if it does get a bit bad I've said to [wife] sometimes you know, I've got to have a little blow here, just for a little while. That's it.
Oh it was dreadful. Oh. I thought the world had ended ‘cos I’ve always driven. I like driving, I used to drive, our daughter lived in Germany for years, so I used to drive to Germany regularly. And when I couldn’t drive, the first three, six months, and all the ads on the telly seemed to be for cars [laughs]. And I couldn’t drive. And it was horrendous, it was really horrendous.
How did you get about?
Well I’ve got children who, you know, who are very good. But they’ve got their own lives to lead and they’ve got work, you know. And then, and then we moved down here, which was easier then ‘cos there’s buses to town, you can walk to the town, you know. My wife bought one of those little shopping trolleys you pull behind you and, you know, but and we did that for nine years, you know, and it was difficult, you know, it was, some days it was great but other days if we were doing a job and you wanted something, it was like, it was epic, you know. I’m a classic case. If, if I had an appointment in, in hospital, in the local hospital I catch the bus. Now the buses only run every hour, so if we’ve got an appointment at, say, half past ten, the half past nine bus is too late, so it was the half past eight. Then if you miss the bus home… So you’re looking at about four hours for a journey that would take you 20 minutes, you know. And then when I went to [city] then, you know, to have my checks and that, you know, before monitoring, it, it, well it was all day, it was unbelievable, you know, it’s… I think, I think, I think modern living is built for cars, you know. But, but we survived, you know, and then I’ve been back, I’m back driving now and it’s great, you know.
Was there a hospital transport system you could have used?
Oh well that is dreadful. “We’ll pick you up at 9”, and you’re like at half past ten and they still haven’t turned up, you know. So I didn’t bother with that, I thought I wouldn’t bother with that, you know.
Several people had been issued with a disabled parking permit (blue badge) and Daniel had also obtained a car through the motability scheme whereby you exchange part of your state benefits for a lease on a car, scooter or powered wheelchair.
I’ve now had five pacemakers, four of which are bi-ventricular. And again I’ve been lucky, I was one of the ones that really I’ve not had a bad time of it. I know of a lot of other people who have had a really rough time and use shed-loads of medication. And I’m at the situation now where, although I’m a blue badge holder, I would still consider myself not severely disabled or even disabled really.
How far can you walk?
A couple of hundred yards on a level surface before I start getting out of breath, although the, on the, on the day that I went for my disability assessment for the blue badge, it was held at the local library actually, and the lady doing the assessment, who was an industrial qualified person who was doing this kind of thing all day every day by the sounds of it, accompanied me on a walk round the library and she noticed that I was starting to get out of breath within about 30 yards. And by the time we’d got back to the office where we were doing the assessment, and unbeknownst to me, she was actually timing how long it took me to recover from being breathless. And it took me ten minutes to recover. So I would say that that was a particularly bad day, a good day from the assessment point of view, but I’m not usually that out of breath, although it does vary.
How much can you walk? Well, I think you said earlier, about a hundred yards, and you're done in.
It can be less. Sometimes it can be less. Sometimes it can be ten yards. Sometimes it can be, there was times during this last winter when I was able to walk the dog a mile round the park, with regular rests on benches. But that's something I wouldn't be able to do at the moment.
So you're very dependent on your car.
Yeah.
Presumably - do you have a blue badge?
Yeah, I've got a disabled parking badge. And also the car's supplied to me by Motability as well.
Excellent.
It's a lifeline really, because it means I can see the kids when I need to see my children. Although I do virtually see them every day [laugh].
Do they live nearby?
It’s not far away, no.
So, how did you find out about the Motability thing? I mean was that just offered, or did you have to ask?
I actually didn't apply for Motability. I was applying for the Personal Independent Payment, which has taken over from the Disability Allowance, isn't it? And then I, I had a home interview by one of their inspectors, I suppose. And it was her, I think, filled out that side of it for me. I wasn't expecting it at all, when, when, I was quite surprised when I was awarded it.
Great. And so you get that PIP benefit as well, then?
Yeah, yeah.
Mobility scooters are another way of people being able to get further than they could on foot. Norman owned his own scooter and used it every day for a ride around the countryside near his home. Others hired a scooter when out shopping through a local Shopmobility scheme. These operate in many town centres and are available for anyone to use and are often, but not always, free of charge. Paul said he was considering using one when he goes on holiday abroad to keep up with his family when out walking. Some said they might need a scooter of their own in future because of their heart failure and other health problems.
I, many years ago I used to horse ride, I love horses, love riding. I had to stop doing that, I can’t do it. I can’t ride a bike. I can’t walk down to the end of my terrace. The dog needs walked and I find that extremely difficult and painful to the point where it’s no longer enjoyable, it’s something that’s got to be done because the dog needs it but it causes an immense amount of pain for me and I often come, come home after a walk and I’m quite upset and tearful because of the pain. That is mainly due to the, the inflammatory, the arthritis and the vascular disease. And it’s also, I do voluntary work, I give benefits advice in our local cancer centre and I see patients who have been diagnosed with cancer and I help them apply for their benefits that they’re entitled to, but my health is now at the point where if I don’t get a mobility scooter I’m going to have to give up that as well. And that’s something I really enjoy. I think if I lost, if I lose that it’s going to be really difficult to keep going. Yes I’m quite worried about that.
So what’s going to determine whether you get a scooter or not?
My doctors have advised against one because I’ve got to stay mobile because of the type of arthritis I’ve got, with it being spinal and pelvic. I’ve got issues with my ankles and feet as well, and obviously because of the vascular disease I need to stay mobile to keep the blood pumping down my legs, otherwise there’s a risk of infection and possibly gangrene, and that would mean losing my leg. So it’s really important I stay as mobile as I can for as long as I can. So I’m now in the position of thinking do I buy myself a scooter against doctors’ advice or do I just go along with doctors’ advice and stop my work? So it’s a little bit of a…
But how far away is the cancer centre where you have to go?
It's very close, its only about a 15 minute drive. It’s about a 15 minute drive but because I now see patients on wards it means walking around the hospital. And as everybody knows, hospitals are quite big places, and it’s very difficult to get from where I am into the main hospital block, and I have to sit down and have rests along the way. And again it’s really painful and it can be distressing, on days that I’m feeling particularly low it becomes quite distressing.
So if you had a scooter would you use it inside the hospital?
I would use it inside the hospital. I joke about it now, I do make a bit of a joke of it, but in my own head I know, you know, it’s quite serious and I do need to either fork out of my own funds and buy this scooter to enable me to carry on doing my work, and I think that’s probably what I’m, I’m going to do. I will ask a couple of charities possibly for a grant because it is enabling me to carry on working, and if that fails I will just fund it myself.
Other mobility aids sometimes used by people we spoke with included wheelchairs, wheeled walkers or rollaters, and walking sticks. Although it isn’t meant to be used as a walking aid, Cathleen finds pushing her shopping trolley a helpful support when out walking. Some had also obtained a seat for their kitchen or shower.
What about walking? How far can you walk?
I can, if I’ve got the, I’ve got a what I call a chariot, which is.
Zimmer.
A wheeler, which is a seater.
A wheeler, yes.
There’s a seat on it, four wheels.
Oh yeah.
I mean I can walk from here round to the shop and back again but I have to sit down for two or three minutes at different times. I mean by the time I get back I mean it’s , I’ve had enough but I can do that if I have to but I do have to rest about three or four times, and I mean it’s not that far away from here.
Then you’ve got a stick you use indoors.
The stick I use indoors and I use, if I’m out I just take the stick with me if I’m not going to do a lot of walking. Like we went to bowls the other night, well, I only had to walk kind of from here across the road to go into the hall, so I just take my stick with me.
It’s only if I’ve, it’s like when we go fruit picking, I can go, they’ll let me drive down to the beds and then I get the chariot and I walk it down through and then sit on it to pick the fruit because it’s at [company name] and their strawberries are up here on…
Oh right, they’re raised.
They’re grown high. So I can just sit and do that and of course, with cherries on the tree, I can just sit or just lean off the thing and pick them that way.
People with heart failure may experience financial hardship, and may be entitled to one or more government benefits, such as Statutory Sick pay, Employment and Support Allowance (which has replaced Incapacity Benefit), Personal Independence Payment or Attendance Allowance. See gov.uk.
My last seven years of work I was a business advisor for start-up businesses specialising in social enterprises, for a local enterprise agency up in [county]. We used to have staff meetings fairly regularly and often went away to have the meeting, so it was a bit of a social event as well. And at one of those events we were in something of a tower block, it was, about four storeys tall, and lunch was going to be on the roof, ‘cos it was a buffet and it was the middle of summer, no problem with that. However, there was no lift so I had to climb the stairs. Well by the time I had got to the top of the second flight of stairs I was pretty much out of it, I was really out of breath and gasping. And at just that particular moment my boss happened to come past, enquired if I was okay etcetera etcetera, which I told him it was not a problem, I just needed to rest and then I’ll be fine. I actually made it to the roof and had lunch etcetera etcetera, no problem. Within six months of that event, and I’ve got no nothing to substantiate the claim, I was offered early retirement with quite a substantial financial incentive. And as my cardiologist had already said to me at that time, “You’ve now reached the end of medical intervention, and really there’s nothing left for you now other than a transplant as and when that may be necessary”, I accepted the early retirement package, so I did retire early, about 18 months early, got my ESA. What’s that?
Employment Support Allowance.
Employment Support Allowance, that’s where the, eventually, because I went through the Atos assessment, which was quite frankly laughable, absolutely pathetic. I rather suspect that it was in line with their contract as written by the bureaucrats in London, but as far as assessing me as to whether I was fit to work or not, quite frankly it was just laughable. Also the person doing the assessment was, had nothing to do with, with heart conditions whatsoever, I think she was a physiologist but there we go.
So my initial assessment from Atos was that I was fit for work. Well I wouldn’t accept that and said that I would go to tribunal, and got supporting information from doctors and other professional people, and hey ho they looked at my file again, my case and decided that actually I wasn’t fit for work and I did qualify for ESA at the higher level and it should be backdated 18 months. So I actually ended up with them paying me an additional £1800 as a lump sum, and I think it was over £90 a week, but anyway, which was very useful. Also under ESA I was, I was able to work up to a certain limit of earnings, so I actually took a part time job as a driver for a blind lady who was going round demonstrating how to use computers to people who were losing or have lost their sight. So that was quite a useful and interesting and informative period as far as I’m concerned.
It, it's difficult. It affects, you know, when you come home from hospital, your mind is still all about work. You know, when, it takes such a long time for, it's almost like you've been indoctrinated to being a robot, to go to work. That's all I thought about. ‘Got to get back to work, I've got to get back to work’. And for a while, the thought of being on benefits horrified me. You know, ‘Oh, what's everybody going to think of me, if I have to go on benefits, you know, and I'm not working? God, there's a stigma attached to that’. And it does, it takes, it takes a long time. And I used to be quite, you know, turn my nose up at people that go, "Oh, I'm unemployable now, I've been off work that long". And I can understand what they mean now. Because if I was to have to go back to work, which would be a possibility after a transplant, I would find it incredibly difficult.
He says that being able to drive and get out of the house is very important.
He says that being able to drive and get out of the house is very important.
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It is, because it's virtually the only way we've got to go out anywhere. I can go and see other things and we can enjoy ourselves driving, you know. To sit indoors all day long, I just can't do it. I don't want to. Even in the morning there, if it's raining, I still go out for my walk if I can. But when we go out, if we go to [place]... we go to [place], go in the Park and Ride and then it's not a fast walk round, it's a slow walk round. You know, we get round alright, I don't' we don't spend all that amount of time in there, but if it does get a bit bad I've said to [wife] sometimes you know, I've got to have a little blow here, just for a little while. That's it.
Mike was devastated by being unable to drive; he used buses to get around and journeys to hospital took far longer than they would by car.
Mike was devastated by being unable to drive; he used buses to get around and journeys to hospital took far longer than they would by car.
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How did you get about?
Well I’ve got children who, you know, who are very good. But they’ve got their own lives to lead and they’ve got work, you know. And then, and then we moved down here, which was easier then ‘cos there’s buses to town, you can walk to the town, you know. My wife bought one of those little shopping trolleys you pull behind you and, you know, but and we did that for nine years, you know, and it was difficult, you know, it was, some days it was great but other days if we were doing a job and you wanted something, it was like, it was epic, you know. I’m a classic case. If, if I had an appointment in, in hospital, in the local hospital I catch the bus. Now the buses only run every hour, so if we’ve got an appointment at, say, half past ten, the half past nine bus is too late, so it was the half past eight. Then if you miss the bus home… So you’re looking at about four hours for a journey that would take you 20 minutes, you know. And then when I went to [city] then, you know, to have my checks and that, you know, before monitoring, it, it, well it was all day, it was unbelievable, you know, it’s… I think, I think, I think modern living is built for cars, you know. But, but we survived, you know, and then I’ve been back, I’m back driving now and it’s great, you know.
Was there a hospital transport system you could have used?
Oh well that is dreadful. “We’ll pick you up at 9”, and you’re like at half past ten and they still haven’t turned up, you know. So I didn’t bother with that, I thought I wouldn’t bother with that, you know.
Although he qualified for a blue badge disabled parking permit due to breathlessness, Paul doesn’t consider himself disabled.
Although he qualified for a blue badge disabled parking permit due to breathlessness, Paul doesn’t consider himself disabled.
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How far can you walk?
A couple of hundred yards on a level surface before I start getting out of breath, although the, on the, on the day that I went for my disability assessment for the blue badge, it was held at the local library actually, and the lady doing the assessment, who was an industrial qualified person who was doing this kind of thing all day every day by the sounds of it, accompanied me on a walk round the library and she noticed that I was starting to get out of breath within about 30 yards. And by the time we’d got back to the office where we were doing the assessment, and unbeknownst to me, she was actually timing how long it took me to recover from being breathless. And it took me ten minutes to recover. So I would say that that was a particularly bad day, a good day from the assessment point of view, but I’m not usually that out of breath, although it does vary.
Daniel cannot walk far so is dependent on his car, which he obtained through the motability scheme as part of his state benefit entitlement.
Daniel cannot walk far so is dependent on his car, which he obtained through the motability scheme as part of his state benefit entitlement.
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It can be less. Sometimes it can be less. Sometimes it can be ten yards. Sometimes it can be, there was times during this last winter when I was able to walk the dog a mile round the park, with regular rests on benches. But that's something I wouldn't be able to do at the moment.
So you're very dependent on your car.
Yeah.
Presumably - do you have a blue badge?
Yeah, I've got a disabled parking badge. And also the car's supplied to me by Motability as well.
Excellent.
It's a lifeline really, because it means I can see the kids when I need to see my children. Although I do virtually see them every day [laugh].
Do they live nearby?
It’s not far away, no.
So, how did you find out about the Motability thing? I mean was that just offered, or did you have to ask?
I actually didn't apply for Motability. I was applying for the Personal Independent Payment, which has taken over from the Disability Allowance, isn't it? And then I, I had a home interview by one of their inspectors, I suppose. And it was her, I think, filled out that side of it for me. I wasn't expecting it at all, when, when, I was quite surprised when I was awarded it.
Great. And so you get that PIP benefit as well, then?
Yeah, yeah.
Rose and her friend pay to hire mobility scooters to get around the local town; she thinks she may need one of her own in future.
Rose and her friend pay to hire mobility scooters to get around the local town; she thinks she may need one of her own in future.
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You know, at least I can get out when I’m on a good day I go to my friend’s. We go to [town] and we hire these motor scooters and we get around town like that ‘cos there is no way I could walk around the town and nor could she. You know.
They are free though aren’t they?
No.
No?
No you have to pay £15 for a year and then on top of that every time you use one you pay a pound.
Oh, ok.
That’s, that’s in [town] a proper mobility.
Right
They all act different ways, you know. In [another town] you can go in and have one and pay whatever you like.
Oh really?
Yeah, so lots of difference between them.
I think later on in life I might need a scooter, mobility scooter, but I think that’s a bit further on yet.
Yeah.
Cos I don’t want to get one now because it’d like make me lazy.
Right
And I don’t want to do that. You know, if I can walk I’ll walk even if I have to stop half a dozen times wherever I am going.
Yeah
You know.
Beth wants a mobility scooter to help her get around the hospital where she does voluntary work but her doctors have advised her to keep walking instead.
Beth wants a mobility scooter to help her get around the hospital where she does voluntary work but her doctors have advised her to keep walking instead.
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So what’s going to determine whether you get a scooter or not?
My doctors have advised against one because I’ve got to stay mobile because of the type of arthritis I’ve got, with it being spinal and pelvic. I’ve got issues with my ankles and feet as well, and obviously because of the vascular disease I need to stay mobile to keep the blood pumping down my legs, otherwise there’s a risk of infection and possibly gangrene, and that would mean losing my leg. So it’s really important I stay as mobile as I can for as long as I can. So I’m now in the position of thinking do I buy myself a scooter against doctors’ advice or do I just go along with doctors’ advice and stop my work? So it’s a little bit of a…
But how far away is the cancer centre where you have to go?
It's very close, its only about a 15 minute drive. It’s about a 15 minute drive but because I now see patients on wards it means walking around the hospital. And as everybody knows, hospitals are quite big places, and it’s very difficult to get from where I am into the main hospital block, and I have to sit down and have rests along the way. And again it’s really painful and it can be distressing, on days that I’m feeling particularly low it becomes quite distressing.
So if you had a scooter would you use it inside the hospital?
I would use it inside the hospital. I joke about it now, I do make a bit of a joke of it, but in my own head I know, you know, it’s quite serious and I do need to either fork out of my own funds and buy this scooter to enable me to carry on doing my work, and I think that’s probably what I’m, I’m going to do. I will ask a couple of charities possibly for a grant because it is enabling me to carry on working, and if that fails I will just fund it myself.
As well as hiring a mobility scooter for shopping, when visiting a museum Richard borrows a wheelchair and needs someone to push it.
As well as hiring a mobility scooter for shopping, when visiting a museum Richard borrows a wheelchair and needs someone to push it.
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Another thing that’s changed as a result of me having heart failure is that because I can’t do a lot of things that I used to do, I have to rely more on other people. And I have to get help from other people on all sorts of things— carrying things around and help with perhaps managing my own finances.
I also need to, you know, arrange that I can get a wheelchair if I am going out somewhere to visit somewhere such as a museum where you would need to go round walking, or even to go shopping in a major shopping centre. I can’t walk the distances around the shops. And therefore I would need a mobility scooter to do that. And I find all that frustrating.
So do you use one of those shop mobility schemes?
Every time I go to the major shopping centre near here I have to hire a mobility scooter, yes. And I went to a museum yesterday and I had to have a wheelchair there and somebody to push it round all the day.
Ted sometimes uses a walking stick and at others a 4-wheeled walker with a seat on it.
Ted sometimes uses a walking stick and at others a 4-wheeled walker with a seat on it.
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I can, if I’ve got the, I’ve got a what I call a chariot, which is.
Zimmer.
A wheeler, which is a seater.
A wheeler, yes.
There’s a seat on it, four wheels.
Oh yeah.
I mean I can walk from here round to the shop and back again but I have to sit down for two or three minutes at different times. I mean by the time I get back I mean it’s , I’ve had enough but I can do that if I have to but I do have to rest about three or four times, and I mean it’s not that far away from here.
Then you’ve got a stick you use indoors.
The stick I use indoors and I use, if I’m out I just take the stick with me if I’m not going to do a lot of walking. Like we went to bowls the other night, well, I only had to walk kind of from here across the road to go into the hall, so I just take my stick with me.
It’s only if I’ve, it’s like when we go fruit picking, I can go, they’ll let me drive down to the beds and then I get the chariot and I walk it down through and then sit on it to pick the fruit because it’s at [company name] and their strawberries are up here on…
Oh right, they’re raised.
They’re grown high. So I can just sit and do that and of course, with cherries on the tree, I can just sit or just lean off the thing and pick them that way.
After taking early retirement Paul applied for state benefits and was initially turned down but after a successful appeal had his benefits backdated.
After taking early retirement Paul applied for state benefits and was initially turned down but after a successful appeal had his benefits backdated.
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Employment Support Allowance.
Employment Support Allowance, that’s where the, eventually, because I went through the Atos assessment, which was quite frankly laughable, absolutely pathetic. I rather suspect that it was in line with their contract as written by the bureaucrats in London, but as far as assessing me as to whether I was fit to work or not, quite frankly it was just laughable. Also the person doing the assessment was, had nothing to do with, with heart conditions whatsoever, I think she was a physiologist but there we go.
So my initial assessment from Atos was that I was fit for work. Well I wouldn’t accept that and said that I would go to tribunal, and got supporting information from doctors and other professional people, and hey ho they looked at my file again, my case and decided that actually I wasn’t fit for work and I did qualify for ESA at the higher level and it should be backdated 18 months. So I actually ended up with them paying me an additional £1800 as a lump sum, and I think it was over £90 a week, but anyway, which was very useful. Also under ESA I was, I was able to work up to a certain limit of earnings, so I actually took a part time job as a driver for a blind lady who was going round demonstrating how to use computers to people who were losing or have lost their sight. So that was quite a useful and interesting and informative period as far as I’m concerned.
Daniel found it difficult to come to terms with being unable to work and having to rely on state benefits; he felt he might be stigmatised.
Daniel found it difficult to come to terms with being unable to work and having to rely on state benefits; he felt he might be stigmatised.
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