Val

Age at interview: 70

Brief Outline:

Val suffered from pain most of her life, beginning with the onset of periods, and was diagnosed with chronic fatigue syndrome 15 years ago. Other problems include arthritis, depression and heart trouble.

Background:

Val lives alone. She retired from work as a head teacher due to ill health in her 40s. Ethnic background: White British.

More about me...

Val has experienced health problems for most of her life. She has always suffered from period pain and migraines. She describes 2 breakdowns in her life, one at school and one at work following which she was medically retired. Since retirement she has been engaged in voluntary work, although her worsening conditions are now making that almost impossible. Val has a long history of osteoarthritis and also describes periods of depression. She also has atrial fibrillation (an irregular heartbeat). The main impacts of her health conditions on her life centre on pain and fatigue which also affect her ability to enjoy a good night’s sleep.

In 2000, Val was diagnosed with chronic fatigue syndrome, which she believes is “a dustbin diagnosis.” At the time of interview, Val was in the middle of 2 ‘live’ issues in relation to condition management. Firstly, she had recently been withdrawn from all of her pain medication following a medications review with her GP and a pharmacist, as none seemed to be helping. Secondly, delays in securing a rheumatology referral had led Val to seek private opinion whilst waiting for an NHS appointment. However, this had caused problems because the 2 consultants did not agree on a diagnosis and are based in different places, which makes collaboration and sharing of medical records difficult.

Although she was angry when a doctor first told her so, Val believes that “you have to learn to live with” your health conditions. She has tried a range of complementary therapies to combat the pain and fatigue brought by her conditions. However, keeping active and swimming seem to work the best. She criticises the NHS for not taking a holistic approach.

Val finds variable pain difficult to cope with. Sometimes there doesn’t seem to be any reason for it and it is difficult to control.

I know it… if I try and do some housework, I know it’s going to cause pain. On the other hand, there are… there are times when, for no reason that I can see, it’s much worse than it has been. So… and, it’s not just, sort of, daily or weekly, it can be within the same day, that it will vary enormously, and I’ve not done anything to trigger it, that I know. I mean, I might have done, but I… you know, I’m not aware of doing anything to trigger it, which makes it quite hard to deal with. Because, if you… if you know you’ve had an operation and it’s causing pain, and you need to take painkillers, you know that it will go away, you know what’s caused it. But, with chronic pain, quite often, you don’t know what’s caused it, and you… you can’t control it.

Val sees herself as someone who used to be a competitive person who wanted to get things done. As she has got older she has changed her personality so as not to make her pain worse.

I was always what they would call an A-type personality, so if I wanted something done I wanted it done yesterday, not tomorrow. And I think that’s partly getting older, I mean, I’m 70, so I think that as you get older you realise that things like that aren’t as important as you might have thought they were when you were young. But, no, I tolerate all sorts of things now that I would never have been able to tolerate when I was younger. Because, I was quite driven, I was… I’ve always been very competitive, so, yes. But, now, no, I don’t, if it’s going to cause me pain, and I don’t need to do it, I don’t do it.

Val feels that GPs need to be quicker to admit when they don’t know what’s happening or what the treatment should be, and referring on to specialists.

I think you have to, I think you have to listen very carefully to what your patients are saying. I think you have to choose the questions you ask them very carefully so that you elicit the information that you need, which may not be the information that they understand that you need. I think you have to give them respect and credibility in terms of their own intelligence and their own choices, but I think you have to be a lot quicker at admitting that you don’t know what’s going on, you don’t know what the treatment should be and making sure that you find someone who does and send the patient to that person. And given that all of the GP surgeries are it seems to me operating like small businesses now, the one thing you shouldn’t be doing is looking at the cost of that. The one thing you should be doing is keeping the patient and the problems they have central in all your thinking and everything that you do. And I’m not sure that’s happening now.

Val has been seeing two different rheumatologists who currently have different views on her diagnosis. She has found problems sharing records between the two hospitals.

I don’t know what I’ll do. Because, the pain…the… I’ve got to get something that sorts the pain out, I can’t live with the incapacity and the pain, because I’m on my own. But, it isn’t just that, you know, the treatment will vary according to which diagnosis you go with. The one yesterday is talking about injections into the spine. Well I don’t want to have that done unless I’ve absolutely got to. The one that is in [town], he was talking about some sort of drug therapy which is available. Whereas, the one yesterday was saying, he didn’t see…think I fitted the criteria for the drug therapy. And, I’m thinking, actually I’d quite like you to get together and talk about this and, you know, and decide what is the most appropriate diagnosis, and what is the most appropriate treatment, because I haven't got the expertise to do that.

So, are you now…you’ve effectively got two different consultants.

Yeah.

Are you still paying for the private one and you’ve got the NHS one as well?

Yeah. The private one is very good, because, yes, I’m paying for the consultations, but he’s sent me to the [hospital A] for all the bloods, all the x-rays, and the CT, so I haven't been paying for any of the tests. The ridiculous thing, which absolutely infuriates me, is I deliberately asked the…the medical secretaries if I could have the reports that came from the bloods and the x-rays, so that I could take them with me yesterday. They gave me the written reports, they told me that the [hospital B] could access all of the x-rays, they told me categorically, I asked the specific question. Speak to the guy yesterday at the [hospital B] and he said, no they can’t, they cannot get the x-rays that have been done in [county]. And, I’m thinking, this is absolutely ludicrous, this is ridiculous, why can the NHS not share information about a patient, I don’t get it.

Val doesn’t mind seeing different GPs but her personal experience has led her to believe that they are sometimes not quick enough to refer on for specialist opinion.

I was very pleased when I moved here. I don’t mind the fact that you don’t necessarily see the same GP every time because, you know, I mean, I think, if you see GPs who’ve trained over a long period of time you know, older GPs, younger GPs, whatever. The younger ones would have trained more recently, so they might be a bit more up to date. I get on quite well with him, I think he’s a bit wishy washy, he asked me what to do. 

My daughter came with me to the last consult with him, because she was absolutely furious about the diagnosis of the ankylosing spondylitis, and the fact that it hadn’t been diagnosed before. And, the man in [town] said he thought I’d had it since I was in my twenties, but, you know, he’s the latest in a long line. 

I’ve been to four GP surgeries in my adult life, because I’ve moved, you know, you…you can’t hold GPs responsible, but you do think, if they don’t know, they ought to know a man who does. And, they ought to be quick off the mark about sending somebody, like me maybe, for some sort of expert consult, and they’re not. And, whether that’s financial, whether it’s just reluctant to admit that they don’t know enough, I don’t know, I don’t know what it is. 

But the…it’s interesting the rheumatologist in [town] said that, one of the things that he gets most cross about, is the fact that rheumatological conditions are very poorly diagnosed by GPs, and GPs don’t refer people. Never mind early enough, they don’t refer people to rheumatologists, and he thinks that’s very bad. Because, if it is ankylosing spondylitis, and I have had it since my twenties, there’s a lot of damage taken place that could have possibly been avoided.

But, it’s too late, it is what it is.

Before a medications review, Val was taking at least three medicines to help with pain but none of them seemed to work.

Yeah. The pain meds were for what, at that point, was the osteoarthritis and the fibromyalgia. So, I was taking amitriptyline at night as a muscle relaxant, to help with the pain so that I could sleep. I was taking citalopram in the morning for a similar, sort of, reason. I was taking pregabalin, which the pain clinic had suggested might help with the fibromyalgia. Oh god, what else was I taking, there was something else, I can’t remember what it was. But none of them were helping with the pain.

When Val was taking lots of pain killers they didn’t seem to bring relief. Following advice from a pharmacist, her GP undertook a staged withdrawal from her medicines.

Yeah. The pain meds were for what, at that point, was the osteoarthritis and the fibromyalgia. So, I was taking amitriptyline at night as a muscle relaxant, to help with the pain so that I could sleep. I was taking citalopram in the morning for a similar, sort of, reason. I was taking pregabalin, which the pain clinic had suggested might help with the fibromyalgia. Oh god, what else was I taking, there was something else, I can’t remember what it was. But none of them were helping with the pain, and my perception of it was, that every time they added another Smartie to the box, they didn’t take a Smartie away. And they don’t work from a baseline, so they don’t say, okay, at the moment you’re not taking anything, so we’ll try x and see if x works, and if it does great, if not, we’ll withdraw it and we’ll try y. They just keep adding and adding and adding. They’re all toxins, they may or may not be good drugs, I don’t know, but the combination of all of the drugs seems to me to be not a good thing to be taking into your body without thinking about it.

And the pharmacist was the one who said, well, if it’s not helping with the pain why are you taking it? So then, I went to the GP and said what the pharmacist had said, and we agreed that I would do a staged withdrawal from all the drugs.

And, how do you feel compared to when you were on all the drugs?

Ah well, it’s interesting, because, some of the pain that I wasn’t feeling as much before, so the neck pain is worse, so I think the drugs were actually helping with the neck pain. And, the lumbar back pain is worse, and so I think the drugs were helping with that. But, the muscle pain in the arms and the legs, I haven't got any at the moment. But, you see, that is complex as well, because it always does fluctuate, so sometimes it’s bad and sometimes it’s not bad. So, with something like fibromyalgia, you don’t know whether it’s just decided that it’s going to have a few days holiday, or what’s going on. So, I don’t know whether it’s the drugs that have made a difference to that.

Val thinks that her health problems might be related. However, the organisation of the NHS into specialities seems to make the specialists reluctant to view her as a whole person.

Now, it seems like you’ve described conditions and symptoms which are related to obstetrics and gynaecology, then we’ve got the, kind of, CFS, fibromyalgia, osteoarthritis, kind of, group of symptoms, and then we’ve got the problems with the heart. Do you see them as three separate groups of symptoms, or do you think they might be associated with each other in some way, that one’s caused the other, or…?

I’d be very surprised if they weren’t associated with each other in some way. For example, we all now go on Google, so the minute they said ankylosing spondylitis, which I’d never heard of, I started looking at it. Now, that can actually cause heart problems…

Right.

…so, it could well be. But, you know, I mean, I think, that’s one of the problems with the NHS, and I can’t see how they can overcome it, the body is a very complex system, and it’s a mind-body system, and everything is linked. But, the NHS is totally incapable of looking at people as individuals in a holistic way. So, you will be compartmentalised, you’ll go to little empires, and each person will deal with you separately, but they won’t look at you as a whole person. I mean, I’ve tried to overcome that because I am very organised so… I mean, I’ve actually got on my computer my complete medical history, that I’ve written, not they’ve written. And so, if I’m going for a specific problem to a specific consultant, I will do a thing that tells them what’s happening at the moment with other things. Ninety per cent of the time, even more than that, they will glance at the bits of paper, but they don’t really want to look at the bits of paper, they want to do it in their way. 

And, I understand that, because they’re highly trained professionals, but I do think sometimes they ought to give patients credibility. I think they ought to be able to listen a bit better to… patients know their bodies, patients, by and large, if you ask them the right questions, if you give them the opportunities to talk, they can actually give the consultants good clues, which should help them. But, consultants are a breed unto themselves, basically.

Val argues that patients need to get as well informed as they can and foster good working relationships with health professionals. Pay attention to diet, exercise and coping mechanisms.

Have you got any messages for other people trying to live with multiple health conditions, or for the carers, or their family, about what they can do, how they might be able to cope, things like that?

I think, from the point of view of the patient who’s got, multiple health conditions, I think you have to accept that it’s your body, and it’s your responsibility. I think you have to make yourself as well informed as you possibly can, and the information is out there. I think you do have to be sympathetic towards the…the medics that you come into contact with, and you do have to try and get a relationship with them, whereby you are both working together for the same ends. so, going in and stamping your foot and shouting the odds isn’t going to get you anywhere, you need the medics to be on your side, and I think you need to work at that. 

But, I think you have to put some effort in, and I think you have to look at your own diet, I think you have to look at your own lifestyle, I think you have to look at things like nutrition and exercise. And I think you have to be aware of other techniques of coping with chronic pain and fatigue. So, you know, look at alternative therapies, look at things like distraction techniques, so if you’re busy and you are doing things, it takes your mind off the fact that you’re very tired, or you’re in pain. Really basically you’re not probably going to be cured, you’ve got to accept that, but you’ve got to make the best of your life that you can, and only you can do that. You need help from the medics, in terms of treatments and therapies and medication, but really it’s your responsibility.