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Living with multiple health problems

Advice for people living with multiple health problems

During the interviews, people were routinely asked whether they had any advice for others living with multiple health problems. Whilst there was some crossover in their responses, the range of people we interviewed meant that a fairly long list of recommendations surfaced based on their different experiences. The main issues boiled down to:

•    “getting on with it”, 
•    being positive, 
•    looking after yourself whilst accepting limitations, 
•    using the support available, 
•    the importance of finding a good GP and 
•    prioritising your conditions and/or lifestyle. 

Further specific advice was given around prescriptions, hospital letters, volunteering and complementary therapies.

John and Anne Y felt that it is important for people to talk about their problems with family and friends. For Anne Y, being able to joke about her epilepsy made it easier for her and members of her family to cope when she had seizures. For John, speaking with family members formed part of a broader strategy of taking on the realities of his conditions, which also included finding support and making plans for the future. ‘Support’ often involved disease charities or patient support groups. For example, Ann had found fantastic support from a local Breathe Easy group. However, Gogs also mentioned social workers and distinguished between free and paid for services via organisations such as Age UK. Ronald, Rosemary and Robert were among those who felt that people should follow medical instructions and just “get on with it,” which seemed to suggest that such an approach would be aided by a positive or optimistic mind set.
 

John’s advice is don’t keep your problems to yourself, work out what might cause most problems in the future and find support via the Internet.

John’s advice is don’t keep your problems to yourself, work out what might cause most problems in the future and find support via the Internet.

Age at interview: 77
Sex: Male
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Somebody else who comes to this website who’s got multiple health problems, they might have problems coping, they might be worried about the future, what advice would you give to people who are in the same boat as you are?

That’s a difficult question, isn’t it? Because everyone is an individual. But basically, don’t keep it to yourself. Talk about it with your family. Make sure people who should know do know, and they know what likelihood is gonna happen or what progress could be made, what you can and cannot do, rather than pretending that you can do things that… And try to work out what the progression is of your multiple problems. What is the… What is gonna give you the most problem? Because that’s what you need to sort out first. And try to find the… And for that, look on the internet, find support groups. Not just in this country. And you may or may not feel that you can talk to other people who have the problem. Because people who’ve had the problem, particularly ones who’ve had it maybe longer than you have, lived with it longer, may well have a solution, or a coping mechanism that will help you. And you don’t need to invent the wheel. Yeah.
 

Ann’s chest consultant recommended that she join a Breathe Easy group. She has found the group to be excellent and had recommended similar groups to friends and family.

Ann’s chest consultant recommended that she join a Breathe Easy group. She has found the group to be excellent and had recommended similar groups to friends and family.

Age at interview: 68
Sex: Female
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And the consultant for my chest, he recommended that I joined something called Breathe Easy and it’s a social club for people with chesticles, like myself, of all types, and some of them are quite a lot worse than I am and have to carry oxygen bottles around with them and so on. They haven’t all got COPD. They’ve got other things as well, well, different things, lung things, bronchiolitis or something is one of them. So meeting them and realising that I’m really not too bad after all was quite good, and also we do lots of things together. We go out for a trip on canals springs to mind from last year. They’re going to an arboretum at the beginning of May. They hold Christmas lunches and other lunches at pubs and so forth and it’s quite good and we have lectures from doctors. We have talks by consultants. We have the local respiratory nurse team come in and talk to us, and it’s a monthly group and I’ve recommended it to various friends of mine throughout the country, who have problems with their chests and said, you know, “Find a branch near you because they’re really, really good.” And ours is excellent. I was there yesterday and we were doing a games afternoon. It was being run by Age Concern or Age UK, as they call themselves now, and we were all doing curling and skittles and, [coughs] excuse me, [coughs] on a Wii machine balancing on tightropes and things like that. It was really good fun, so if you get the opportunity to go to one of these clubs it would be really good for you.
 

Rosemary advises people with multiple health problems to keep appointments, listen to doctors, take the medication and “get on with it.”

Rosemary advises people with multiple health problems to keep appointments, listen to doctors, take the medication and “get on with it.”

Age at interview: 67
Sex: Female
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What messages might you give to somebody else who might be living with more than one condition?
 
Well, same as any other I suppose, keep all your, make sure you keep all your appointments and listen to what the consultants are saying, take all the medication they prescribed and get on with it, sort of thing [laughs]. I mean I’m of the opinion that there’s always other people worse off, you know, so let the doctors try and sort them out, you know. 
Being positive and pushing yourself was mentioned explicitly by Amy, who had nearly died in hospital. For Pat, the aim for patients should be to feel a sense of control in managing their health problems. For Val, people are responsible for their own bodies and therefore should get informed and develop collaborative relationships with doctors to manage the conditions together. Lottie advised people to research their conditions on the Internet but to take care to use only reliable websites. Rosemary mentioned the importance of people “keeping moving.” Angela suggested people should “keep fighting” and Barry stressed the importance of not giving up. Both Loraine and Fiona said that it was important to recognise that you control your health conditions – they do not control you.
 

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.

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.

Age at interview: 70
Sex: Female
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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.
 

Barry says that the only way forwards is to accept the reality brought by multiple conditions and “keep trying.” Never give up.

Barry says that the only way forwards is to accept the reality brought by multiple conditions and “keep trying.” Never give up.

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Could I ask you for any advice or messages you might have for other people who are living with more than one condition?

Just get on with it really because you get you get the medication from your doctors and I’ve often said, it depends on impression. If you’re a wimp, you’re always going to be a wimp. If you’re just going to accept it and get on then that’s the only way forward really is to keep on trying but also, on the other hand, know your limitations as well. But you you’ve got to try. You mustn’t give up.
 

When Fiona was diagnosed with diabetes as a teenager the doctor advised her: “You control the diabetes. It does not control you.” Effective drugs and open communication with doctors can help find control.

When Fiona was diagnosed with diabetes as a teenager the doctor advised her: “You control the diabetes. It does not control you.” Effective drugs and open communication with doctors can help find control.

Age at interview: 25
Sex: Female
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Would you have any messages for other people living with multiple conditions? So that might be with the conditions that you have or with other combinations.

I think firstly, I’d say to them, it’s not the end of the world really. I think it can feel like it, and especially if you’re young when you’re diagnosed with diabetes, you just think, you know, the world’s ended, everything has changed, everyone is going to look at you different. And it’s sort of, you feel like it’s going to end but it’s not going to end and people aren’t going to look at you differently and if they do, you just ignore them really because they’re not worth your time.

Okay. Great.

Yeah, and, you know, there might be roadblocks on your way but, I mean I was given a great piece of advice from my paediatrician, when I was diagnosed, and it was you control the diabetes. It does not control you.

That’d be what I’d say to someone with diabetes. I think again, with the epilepsy, it’s, you know, you control it. If you can get onto the right medication and keep open communication with your neurologist, then it can be very well controlled and you can go on and be very successful and you can, you know, eventually get, you know, your driver’s licence back if you have to give it up for a year.
At the same time as “being positive” or “getting on with it,” people interviewed also referred to the importance of accepting one’s limitations. Mohammed likened the body to a motor car and suggests the importance of not pushing too far. He advised people  to prioritise their different conditions or lifestyle issues. For Nigel, coping involves looking after yourself and “keep fighting.” Robert spoke about acceptance in terms of lifestyle adaptations or other changes brought by treatment as it’s “better than being dead.” Specific advice involved eating healthily (Derrick) and losing weight (Eric).
 

Mohammed suggests that you have to learn to recognise your age and any damage from health problems. Then you can adapt your life to the new circumstances.

Mohammed suggests that you have to learn to recognise your age and any damage from health problems. Then you can adapt your life to the new circumstances.

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You have to recognise your age. You have to recognise that you have certain difficulties and adapt your life around it. You can’t simply go in and have two stents and so on and come back and say nothing has happened. Whether they will cause any stress or damage you don’t know, but it’s always in the back of your mind because very much like you sit in a clapped out car and you know that there’s limitation. You know, it’s pointless putting it on a motorway and putting your foot down knowing that it is just not capable of doing that, and I think that applies with your own body as well. Simplest way I can put it.
 

Nigel recommends that people with diabetes look after themselves and then “keep fighting” when other conditions come along.

Nigel recommends that people with diabetes look after themselves and then “keep fighting” when other conditions come along.

Age at interview: 58
Sex: Male
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If I could ask you any messages that you might have for people that are living with more than one condition, what might you say to them?

Well, anyone that’s just starting out with diabetes, just look after yourself. Really, really, really, really take care because it affects so many parts of your body, you don’t realise and when you’re when you’re thirty, you’re think you’re indestructible, and because I didn’t look after myself at the beginning, I’m sure where a lot of these problems have started from. And I don’t think people realise how it gets you down, one thing after another after another seems to knock your spirit, and I suppose the only thing I can say is keep your chin up and keep fighting.
 

Eric advises people to reduce weight, especially those with diabetes. However, in spite of dietary restrictions he argues that “there has to be some joy in life.”

Eric advises people to reduce weight, especially those with diabetes. However, in spite of dietary restrictions he argues that “there has to be some joy in life.”

Age at interview: 84
Sex: Male
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What messages might you give to other people who are living with more than one condition? Do you have any advice or messages for them?

Oh, just be careful in what you do, you know, and do all the obvious things. If you can reduce your weight, especially from a diabetes point of view, if you can reduce the weight, then reduce it. I wish I could. I keep trying and trying and it has no effect whatsoever, which is a bit dispiriting, but, you know, that’s the way of, certainly do that…

…and also, you know, with the diabetes, watch what your sugars and things are, you know. I know it’s hard but I have this little phrase that there has to be some joy in life. That’s why I have my little bit of choccy [laughs]. You can’t wipe everything off the slate, no, just, you know, be sensible be sensible, that that’s the word.
When offering advice for other people living with multiple health problems, several of the people we interviewed spoke about the importance of finding a good GP. The key role of GPs in managing people with multiple health conditions is also underlined in recently published guidance from NICE (National Institute for Health and Care Excellence).
Gogs spoke in detail about the need for a good GP given that they can act as your advocate with the rest of the health service. For Amy, her GP was seen as her most useful resource. For Fred, GPs were best used sparingly. This view could have been affected by the fact that it was difficult for him to get appointments with his preferred GP as she was very popular and worked part time. For Pat, the key lies in finding an individual GP who listens and understands you the best. Communication was highlighted. For example, David felt able to talk to his GP about coming off medicines that were causing problems. Lottie said that people shouldn’t be afraid of asking doctors questions.
 

Gogs says people need a good GP as some consultants are more difficult to communicate with than others.

Gogs says people need a good GP as some consultants are more difficult to communicate with than others.

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I’m just interested if there’s a couple of tips…

Right.

…coping strategies, advice around anything that we’ve talked about that you would give to other people?

Well, I…yeah, I think in relationship to the health issues, you know, it’s a minefield that, you’re…you’re not…even I who have got experience is not really getting through that very well, but you do need a really, really good GP who, you know, is your advocate really. The person that will sort things out clinically, medically for you, and if you haven’t got one, then you need to find one and if that means that you need to go to a GP up the road and say, I want to sign on, then that’s what you do, because, without a good GP you really are lost, you can’t get through to, some…you know, it’s unfair that… I have four consultants looking after me, and I have to say that they’re…that, there are two of them that are really, really easy to communicate with, you know, are not defensive in any way, but consultants, like all of us, they’re just human beings and they take into that profession their baggage unfortunately and the people that lose out are the patients, because when you are a patient you’re very vulnerable and you always have to remember that, because when you go in you’re expect…you’re expect…you’re expecting something. 

And if it’s not forth coming it just leaves you then to have to try and work out yourself and that’s why a good GP would be very useful for that. If they don’t…if the consultants don’t give you the answers, go to your GP and he will be able to help you.
 

Lottie advises people to get advice from specialist web sites and be open in asking questions and expressing feelings about treatment to doctors.

Lottie advises people to get advice from specialist web sites and be open in asking questions and expressing feelings about treatment to doctors.

Age at interview: 37
Sex: Female
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If I could ask you now if you have any messages for any other people who might be living with more than one condition, what advice might you give to them, what messages?

Do some research, use the internet, obviously, be wary of which sites you’re on. You know, use Epilepsy Action, the Epilepsy Society websites for information. Don’t be afraid to say to your consultant or to your GP how you’re feeling. Don’t be afraid just to ask questions and if you’re not happy with what is being done, don’t be afraid to tell them that.

And keep pushing and keep asking until you get the answers that you’re happy with.

At the end of the day, it’s your body and your life. You are in control, control is not quite the right word because you’re not, but you do, you have a say, you are entitled to have a say in in what treatments and to be happy about those treatments.
 

David urges people to follow medical advice until a side effect is encountered, at which point you should tell your doctor. David’s experience is that things can be sorted out when a problem is raised.

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David urges people to follow medical advice until a side effect is encountered, at which point you should tell your doctor. David’s experience is that things can be sorted out when a problem is raised.

Age at interview: 63
Sex: Male
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Do you have any messages that you might give to people living with more than one condition, any advice or messages for them?

I think the answer is probably keep taking the tablets etcetera [laughs]. And if you have a side effect, go to your doctor [laughs] and come off, and hopefully come off the one that’s causing the problem.

Okay.

Even if it’s their favourite one for treating that condition [laughs].

Do you feel that’s it’s been responded to well, if you’ve ever raised that or?

Yes, thinking about it, when the dosages for the blood pressure on its own have been dealt with, one of the tablets was upped and it did have a side effect on me. I complained. We went back to the original dosage, which sorted it. 

So by pointing out that there’s a problem, you can get something done.
In addition to the broad issues raised above, some of the people we interviewed mentioned more specific things which they had found a help. Gogs advised people to tell the hospital what they wanted to happen to letters about their care (e.g. if they didn’t want to receive copies themselves). Steve was using an app on his Smartphone that reminded him when to take his medicines. He also encouraged people to find out whether they were entitled to free prescriptions. Anne X recommended people to explore complementary approaches that can promote wellbeing, such as laughing or singing therapy.
 

Chris found benefit from voluntary schemes at his local hospital which involved more health checks. He found this increased his confidence in the management of his conditions.

Chris found benefit from voluntary schemes at his local hospital which involved more health checks. He found this increased his confidence in the management of his conditions.

Age at interview: 68
Sex: Male
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If I could ask any messages you might have for other people who are living with more than one condition, any advice or messages for them?

Well, I think one of the things that, certainly with our local hospital that that not only with what you’re doing, but there’s two or three schemes that are volunteer, you know, which you can volunteer for and if you’ve got the time yet they’re worth, I think they’re well worth doing, because you meet cardiologists and things which doing what I’d said earlier on, like a health check, which certainly I had for the first fourteen months. And it did mean me having to go to the local hospital, you know, two or three extra times but they reviewed how your blood pressure was and also that sort of gave you a bit more self-confidence, you were going in the right direction. You might last a few more years yet sort of thing and to make the most of you know, the, you’ve had a serious condition and you luckily, have survived it and that you’ve got to make the best of what’s left sort of thing.
 

Steve only found out that he was eligible for free prescriptions by accident. He has found a phone app helpful that monitors his blood pressure and reminds him when to take medicines.

Steve only found out that he was eligible for free prescriptions by accident. He has found a phone app helpful that monitors his blood pressure and reminds him when to take medicines.

Age at interview: 44
Sex: Male
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One thing that I found by accident, nobody actually told me, that if you’ve got this hormone-related problems with the pituitary and – I can’t remember the name, panhypo-popul-pituitarism or something, you’d actually get a free prescription, you don’t have to pay for any prescriptions, and nobody told me that. It was only because I was looking on the w…NHS website for how to…because my prescriptions currently cost ninety pound every twenty-eight days. So until I was on that, I was, you know, having to pay quarterly prepay. And then all of a sudden I found this and I was like, oh my God, I could actually get it free. So something that’s not very well-talked about, really.

I was just wondering if there was another patient who was kind of facing similar issues that you’d faced, what would be your advice for them?

With the medication get an app on your phone, I think that is a godsend, and a dosette box to organise the medication, because, you know, I couldn’t carry around all my medication in a bag every day that I need to take. Smartwatches are fantastic, if you can get that link up to medication, because it v…it kind of vibrates on your arm more discreetly than having a phone ding to say you need to take your medication. Again, the app that I’ve got, the particular one keeps a note of my blood pressure, weight, etc. so I can keep a little bit of a, an eye on things like that. So I just take a, a note of whenever anybody does any test or anything, you know, I can keep a thing of that, so I can discuss it with the GP, you know, if somebody says, oh, that’s really high, I think, well actually last time it was, it wasn’t. Try and see the same GP if you can, rather than go to different ones around the practice. I find…I found that really helped, that really, really helped. Get to know the receptionists at the doctor’s surgery. That’s really good as well, they, the receptionists know me when I walk in now, so that’s really helpful.
 

Anne X recommends that people try singing and laughing therapy. Such groups can also help get around social isolation as more people live away from their families.

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Anne X recommends that people try singing and laughing therapy. Such groups can also help get around social isolation as more people live away from their families.

Age at interview: 79
Sex: Female
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I would suggest they got down to this singing thing and there’s a laughter workshop that I know that the Chinese absolutely value, they all mass in the parks because they’ve just found that people work better and that they feel good and productivity is greater. And this is because when you laugh, it doesn’t matter whether it’s put on with a ha ha, it still apparently affects the endorphins.

Which is a feel good thing and, therefore, it affects, and it helps the breathing. You’ve got to breathe properly if you laugh and, in the end, it’s quite amusing. I tried it and I could actually look at myself in the mirror and laugh, well, who wouldn’t? Do you know what I mean?

[Laughs]

Real laugh at myself, and [husband’s name] and I have tried it and it is such fun. It’s so liberating. And so this is the same with singing, because I’ve always been a singer. I was always a cantor in the church where I lived before [county].

So I love singing, but the voice is a bit grot and I suppose it’s the reflux. I don’t know, and it’s also getting laryngitis a couple of weeks ago but I’m hoping I’ll get it back, but it’s so lovely, it’s such fun to sing. Whether you’re a good singer, doesn’t matter if you’re out of tune, if you enjoy it, just sing and it’s the company. It’s the fun of it all, you know, and it’s meeting other people and having a laugh. It makes such a difference to people so you actually don’t want to talk about the ills, your ailments particularly. You can do that often enough in other places. You don’t really want to use it to relax, which is what we’re really trying to do, because older people can be lonely, because families are not as they were. They’re fragmented. Gone are the days when you lived amongst aunts and uncles and children and etcetera etcetera.
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