Age at interview: 57
Brief Outline: Beth was diagnosed with heart failure 4 years ago after becoming breathless and increasingly tired. She has since had two heart attacks and developed angina and vascular disease in her legs. Inflammatory arthritis causes her constant pain and limits her mobility.
Background: Beth is divorced and has grown up children. She had to give up her paid job as an NHS administrator because of her health problems but now does part time voluntary work giving benefits advice to people with cancer. Ethnic background: White English.

More about me...

Beth was diagnosed with heart failure about four years ago after becoming breathless and increasingly tired. Before then her blood pressure had been high but she had had no other cardiovascular problems. With hindsight, she wonders whether extreme tiredness she had felt in the past could have been the beginning of her heart failure. She received her diagnosis in a letter that arrived on a Saturday morning, leaving her feeling shocked and angry that no one was available to explain it and provide reassurance until she could see her GP during the week.

Beth’s heart failure is managed with medication; she takes a beta blocker, a statin, lisinopril (an ACE inhibitor), aspirin, amitriptyline and an iron supplement. She also uses a GTN spray for angina pain. Last year she had two heart attacks and was fitted with two stents. The hospital did not follow her up after the heart attacks until she was referred again by her GP because of new symptoms of palpitations and breathlessness again. An echo cardiogram showed the mitral valve of her heart was leaking. She is due to see her cardiologist again soon. 

In addition to her heart failure, Beth has anaemia and limited mobility caused by inflammatory arthritis, for which she takes medicines. She has recently been told she has vascular disease in her legs and is expecting to have a bypass operation for that soon. She had to stop taking anti-inflammatory drugs after her heart failure diagnosis and is in constant pain despite taking strong painkillers.

Beth has a blood test every six weeks to check that her arthritis medication is not adversely affecting her liver or kidney function. She has a medication review with her GP every six months and attends a nurse-run heart clinic at the practice once a year for a general check-up. She feels this check-up is not specific enough for her heart condition and would like access to a specialist heart failure nurse when she has concerns. For her own interest she measures her oxygen saturation with a home device when she feels particularly breathless.

Beth feels that she has not been supported enough by the health professionals and has been left to ‘get on with it’. As a result she searched for information on the internet and contacted some heart charities. She has learned a lot about heart failure from the internet although she found some of the material she read quite shocking. Sharing experiences with other patients through a national charity has provided reassurance and helped her to come to terms with her condition. She would like to set up a support group in her local area.

Beth sometimes feels upset by having to take so many medicines and says that one particular drug affected her mental well-being leading to the break-up of her marriage. Her social life has suffered because she is too tired to go out socially. She had to give up her paid job because of her health problems but now does part time voluntary work giving benefits advice to people with cancer. She is concerned that she may have to give that up too unless she is able to get a mobility scooter to get around inside the hospital. Her doctors have advised her against getting a scooter as she should aim to maintain her mobility for as long as possible to avoid further health problems.

Beth assumed that the burning sensation she felt in her gut after taking medication was a side effect but she later learned it was angina pain.

But one of the things I have noticed is with my medication, I thought it was something getting stuck in my throat and dissolving in my throat, which is why when I was having the heart attacks I never took any notice of the discomfort because I thought it was one of my tablets had dissolved in my throat. And that goes on, happens quite regularly. It still happens. Unfortunately now I know it is cardiac related, possibly angina, so I know to use the spray now, whereas I used to always blame my tablets getting stuck in my throat or a reaction between the meds that I was taking at the same time. 

So can you describe that feeling then, it’s not exactly a pain?

It's not a pain it’s more a, a discomfort. And the only way I could describe it to the hospital was as if I had swallowed bleach, as if I had swallowed a couple of capfuls of bleach and my insides were burning. And that was the pain I felt when I was having the heart attack as well. But like I said because I’d had it prior, and it always seemed to be after I was taking my medications, I thought it was one of the tablets sticking in my throat and dissolving, but unfortunately it turned out it was cardiac. And when I started getting that pain again more recently, I knew, you know, I need to speak to my doctor about this straight away. And my doctor dealt with it, you know, reassured me that it was angina pain and just to use my spray. And if it become more problematic I had to go back in and see him. Or if it didn’t, if the spray didn’t take the pain away I was to phone 999 and get an ambulance straight away.

Beth says that taking her medicines upsets her sometimes.

Yes. It does get me down taking all those medications, it really does upset me sometimes, especially if I’m feeling bit low and sorry for myself anyway. And then I get all the tablets out on the bench and I just get upset when it comes to taking them.

Beth puts her morning pills out then replaces them with her afternoon ones, and so on.

I put them out as soon as I get up of a morning. I put my morning ones out, and then when I take them I put my afternoon ones out, so I know when they’re gone I’ve taken them, and then when I take those ones I’ll get my evening ones out. So it’s a case of as I take one lot I get the next lot out. And I always check the time so I know it’s four hours from now I need to take them.

It was common for men to rely on their wife to put their medicines out ready or remind them to take them. This could be because of memory loss or just because the woman assumed the role of carer 

Once she had joined an online closed support group Beth found it reassuring to know there were people she could talk to about her concerns.

I’ve spoken to quite a few heart failure patients and we all seem to have a similar concern that you’re packed up, you’re bandaged up and you’re sent home and then there’s nothing, you’re just left with all these things going around and these little worries and little niggley things and you do end up building them up in your head. But once you become involved in a community, like I have with heart failure patients, and I know it’s a close community, and often we’ve had the same sort of fears and niggles, we can talk about it with each other. And last year when I was quite anaemic and feeling pretty low I got a couple of phone calls from people just ringing me up seeing how I was and, ‘Right we’re here if you need to talk to somebody’. And that was lovely knowing it was somebody outside of the family, outside of the medical profession who had been through what I’m going through, and I could talk to them. And that was probably more reassuring than talking to any nurse or doctor or consultant. And you know that they’re there for you any time of day or night, you can ring somebody and you get the reassurance you’ll need. And that’s what’s wonderful about charities and the communities that have, it’s like a family away from your own family that you can talk about anything to; that’s lovely. I’ll tell anybody get involved with a local charity, you know, find one, do your research, find a charity on the internet, get in touch with them and build those links and build that network and you will get the support you need.

Beth was full of praise for her health professionals but recognised that they were overworked.

I think they’re all pretty wonderful. I know they are all over worked and probably massive workloads, so there’s work related stress for all of the health professionals I’m involved with. I just think that they’re wonderful people doing a wonderful job, unfortunately they cannot give each patient a hundred percent, and are having to cut it down to maybe 97 percent per patient, which, like me, they probably feel like they’re not getting it all and but we don’t think of it from the doctor’s so there’s, whoever it is, the heart failure nurse practitioner, a nurse practitioner in the GP’s, we don't see it from their point of view because everything’s, it’s our little world and everything’s massive to us in our world and we should be taking priority but the reality is they might have 50 people feeling that they should be priority. And they are wonderful people doing a hard job. 

An expected hospital appointment never happened causing Beth to worry about her heart; she would prefer checks with a hospital specialist to the general practice staff.

I think I needed general reassurance at that time, and I was told I would be given an appointment within six weeks, and I didn’t get that, and nobody seemed concerned that it hadn't happened. I think if I had have gotten that appointment at six weeks I wouldn’t have had any of the concern over the year. And that's all I would have needed, just someone reassuring me and saying, ‘Right, we’re going to monitor you, we’ll see you in a year’s time and see how you’re doing then with the view to possibly discharging you, all being well’. And I think I would have been quite happy with that, but it was that missed appointment that just continued over a long period of time causing more concern - why haven't I been seen yet, what's happening with my heart? And it was the uncertainty that the stents had worked. I was then very anaemic. Had they nicked an artery or something when they were doing the stents? And all these sorts of idiot thoughts going around in my head, which was - it was probably silly, I mean thinking back on it now it was probably silly but those thoughts were there at that time and I needed reassurance at that time, and it didn’t happen.

I think I would have been happier if I had a definite appointment with either a cardiologist or a heart failure nurse, which was specifically for me, you know, ten minutes or fifteen minutes time with me, even if it was just to reassure me. Whereas the clinic, I know it was, the clinic I attended in my GP’s, although it was a heart failure clinic, it seemed more of a general type thing, which is something they do routinely within the practice, and they invite everybody in, and I just felt it was more generalised rather than personalised support. And I think even just one appointment with the cardiologist would have kept me quite happy. And if I’d had a named nurse who I could have contacted if I was worried about anything, if I was concerned about having to use the [GTN] spray more often or anything I could have a quick phone call  to a heart failure nurse and she could have given me the reassurance I needed. 

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.

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.
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